Monday, May 23, 2011

Medically defined death | a good death

Death is signified as controlled by medical authorities ? you can?t escape.

Known as a ?larrikin?, John has terminal cancer of the bowel and is suffering from pain that he ?wouldn?t wish on his worst enemy? (A Good Death, 2010). ?It throbs and throbs, shoots down your leg- it?s just too much?. John is one of four dying Australians who took part in a Four Corners documentary called A Good Death.

On the 8th February 2010, A Good Death was broadcast on ABC television. It was produced by Four Corners, ?the flagship? (McKee 2000, 34) of the Australian Broadcasting Corporation?s current affairs programming. In this episode, reporters Deborah Masters and Matthew Carney interview four terminally ill patients and their families at the Sacred Heart Palliative Care Unit in Sydney. The program records the final hours of the lives of two of these patients who die painful and undignified deaths, the manner of which is barely mentioned, let alone critiqued during the forty-five minute long program. This paper will seek to understand why Four Corners has produced a program about death that focuses positively on the system of palliative care neglecting a discussion about the failure of this practice to deliver a painfree and dignified end to the lives of these people. It will also seek to understand if and how this media representation of how we die, reflects society?s meaning of the journey of death.

Following the broadcasting of A Good Death, an online forum continued to debate the issues that had arisen in this episode of Four Corners. Over four hundred passionate viewers responded offering opinions that ranged from approval and gratitude for the palliative care nurses and specialists, to outright condemnation for the unbalanced overview of this contentious and neglected public conversation about the way we die in this society (ABC Online forum, 2010).

Respondent Lise wrote that she considered the program gave ?a realistic picture of death in Australia?, while another contributor, Robert questioned the role of?? ?the catholic church in the palliative care industry? suggesting it was a ?bulwark? against the voluntary euthanasia movement. Another critic accused the program of being unethical and producing ?a thinly veiled infomercial on the palliative care industry?, while Zarah was concerned that the once popular art of ?dying at home? didn?t rate a mention (Four Corners Online Forum 2010).

The story of these terminally ill people is filmed at a palliative care centre where they did not die as the name of the program would indicate ?A Good Death?. In order to understand why this Four Corners? program is biased towards the culture of palliative care, a textual and semiotic analysis of A Good Death will be performed along with a discussion of the major issues presented in the analysis and the role of Four Corners will also come under scrutiny. This analysis starts with an introduction to the patients whose last days of life were documented by the Four Corners? reporters.

Norma Andrews is dying of primary bowel cancer. The frail, eighty- year old lies propped up, supported by loads of pillows, her white hair just ?set?, and her lips painted bright red. Norma wants to die: ?I go to sleep every night and hope I won?t wake up?, she tells the reporters. Diagnosed fairly late in her illness she has not long to live: ?I bypassed all that nasty stuff ? the chemotherapy, and everything- they said it wouldn?t do any good and there?s no need for that? (A Good Death, 2010). Norma has one daughter, Patti who visits her mother often and openly chats about the preparations she has made for Norma?s funeral. Photos of a younger and cancer-free Norma appear on our screens, and it is clear that this dying patient is a proud and independent woman who has nurtured her looks, and hates her loss of dignity. ?What sort of a life is it when you?ve got to ask somebody to take you to the bathroom every time? Well if you?re thinking about can they give me a pill I know that that?s not possible? (A Good Death, 2010). The fleeting reference to euthanasia passes and Norma resigns herself to the fact that the pill is illegal.

Darryl Calver is only forty-six years old and has pancreatic cancer. He doesn?t want to die and has much to live for having recently reunited with his mother and eagerly looking forward to a life of travel with his partner Margie. The audience is introduced to Darryl as he asks his oncologist how much longer he has to live. The comforting background ?mood? music ceases and is replaced by a more somber and reflective track as Daryl learns that he only has a few short months left of life. Not long after hearing his ?sentence? Daryl is admitted to the palliative care centre with a bowel obstruction and is vomiting incessantly. He is gaunt, pale and has a distended abdomen and is noticeably breathless. The sunken-eyed man is in acute distress and sits rigidly in his hospital bed; his body is racked with pain and he is dying.

John Peart is a large man who sprawls uncomfortably over the narrow bed; his abdomen is distended, and the ubiquitous white gown hides the plastic bag that drains the artificial stoma. Peart?s family-his wife and adult children surround his bed, loving and caring until the end. His son, Reece discusses how the family had to come to terms with John?s imminent death and the concept of palliative care: ?The definition of the word ?palliative? was quite shocking; final stages of life care. We never mentioned the definition to dad,? he said (A Good Death, 2010).

The last patient to appear on A Good Death is Sandy Riches, a sixty -three year old married woman who recently celebrated her fortieth wedding anniversary. She has been living with breast cancer for eighteen years and the disease has made its way into her bones, brain, lungs and liver.? Even so, Sandy clings to life. She?s not giving up yet because she says that ?she has to be here? for her husband and she can?t imagine what will happen to him when she has gone.

The Four Corners documentary is not a pretty account of death; rather it is story of pain, distress and alienation at the end of human life. Is A Good Death a reflection of how our society understands and experiences the dying process and does this account for the way Four Corners? presented these deaths, focusing as it did entirely on the palliative care model? Glennys Howarth claims:

Whatever the relationship between society and the individual, the media is significant as a marker of popular cultures and social mores surrounding death and dying (2007, 202).

How does the public understand real death when as Tercier explains ?it is a rare lay person that has touched a body one minute alive the next dead? (2005, 210). Is there a public conversation about this inevitable end to life or are we in a state of death denial? In A Good Death, Darryl Calver sits alone in a cab on his way to an oncology appointment. He has recently made the difficult decision to stop active treatment as the ?chemo? is failing to arrest the growth of his pancreatic tumour. In a moment of intense intimacy, the dying man shares his frustration: ?I mean we talk about the journey of life, life being a journey. Well, what about the journey of death. Isn?t that a journey as well?? ( A Good Death, 2010).

While stories about childbirth and parenthood literally leap off the weekend newspaper pages, that other mandatory journey of life ? death ? rarely rates a mention. It is easy to understand why we avoid thinking and writing about death. To put pen to paper and write a story about our inevitable demise is confronting and there is definitely no photo opportunity. Even so, we are curious about death: ?the average eighteen year old American having watched 40,000 screen deaths? (Tercier 2005, 210).

A Good Death raised many questions about how we die in this western culture and what we regard as a good way to die. As we have very little contact with ?real death? where do we learn about the history and practice of dying and what is the media?s role in informing the public about our demise? Is the media?s depiction of death a reflection of our cultural attitudes and beliefs or is it instructive and does it frame our perceptions. If the media is a marker of our collective understanding of death as is suggested by Howarth (2007, 102), then how have previous films and television programs framed this final and inevitable end to life?

Howarth (2007, 102) explains that the production of movies focusing on death began at a time when dying was beginning to take place in hospital and it was becoming rare for us to have any contact with real death in our daily lives. Just as a taboo around matters of sex produced pornography in the Victorian era, our disconnection from death has led to the proliferation of death on our screens with films such as Fleming?s? ?007? and Tarantino?s ?Pulp Fiction?, ?both famous for their violent pornography of death? (Howarth 2007, 103). This representation of violent death on the screen is not how most of us are likely to die- screen death is quick-and it does not involve ?dying?. ?Our real death is more likely to follow an unpleasant and protracted illness? (Howarth 2007,104).

In The Contemporary Deathbed, Postdoctoral Fellow in the History of Medicine at the University of California, John Tercier claims that death as portrayed on screen has caused a form of collective death denial (2005, 192) which he blames on popular television programs such as the American series ER which have exaggerated the survival rates of resuscitation. ER is a medical drama which on a ?bad week reaches 20 million and on a good week 35 million? (Tercier 2005, 195) is set inside a frantic emergency room where viewers are ?confronted almost nightly, with a technological whirlwind of death? (2005, 2). Such unrealistic expectations about saving lives Tercier asserts have lead to a cultural mantra that ?all that can be done should be done? (2005, 206). The highly regarded status of resuscitation in the form of CPR, is a myth with Tercier documenting the long-term survival results for the recipients of Cardio pulmonary resuscitation and finding them to be between 1.3 and 5 percent in the major U.S cities ( 2005, 33). The unrealistic survival rates of resuscitation he suggests are manifest of our culture?s denial of death but are necessary for the survival of the series (2005, 29).

?Death with dignity the darkened room, the family gathered around the bedside, a few murmured farewells, and then an exit ?gentle into that good night? (Tercier 2005, 210) has been removed from our lives and replaced with the hospital drama and its death- defying resuscitation scene (2005, 210), with ?siren wailing, and the chest-pumping maelstrom of an ambulance hurtling towards the ER? (2005, 2).Clearly we have lost our way as far as understanding the process of dying.

Fiske and Hartley (2003,11) suggest television programs reveal ?symbolically the structure of values and relationships beneath the surface?. ?We dance around the topic of death and dying. I think for many doctors, perhaps even most doctors, death represents failure,? said Ken Hillman, Professor of Intensive Care at the University of NSW when interviewed for A Good Death (A Good Death, 2010).

In the second half of the twentieth century western cultures started to lose touch with death, mainly due to the growth in the use of medical technology leading to cures for diseases that were once fatal. Longer lives became possible and there was ?a new will to master death,? (Lavi, 2008) and a patient?s demise was seen as a failure of medicine. ?A cultural and psychological denial of death augmented this phenomenon? (Lavi, 2008).

To understand why A Good Death ignored discussing the painful and undignified nature of these patients? deaths, some background on the ABC and Four Corners will now be undertaken. Four Corners which is regarded as ?the flagship of ABC public affairs sessions? (Semmler cited in McKee 2001, 34) began its productive life in 1961. Never ?a top ten? program (McKee 2001,33) but according to the Four Corners website ?part of the national story? exposing ?scandals, triggering inquiries, firing debate, confronting taboos and interpreting fads, trends and sub-cultures? (Four Corners 2010). McKee (2001,315) argues that ?Four Corners survives for its contribution to public debate? but in regards to A Good Death I suggest there was no debate around the issues of dying but there should have been. The ABC may be regarded as ?balanced and impartial because they are free from advertising,? but as Beattie and Beal (2007, 29) claim, they are subject to ?audience demands and expectations?- which means that they will go along with ?current trends? in the mass media. Our society generally approves and supports this model of care for the dying with the Commonwealth and the State governments supporting palliative care access to those all those Australians who need it (Australian Government 2000).

The palliative care unit in which John, Darryl, Norma and Sandy are being cared can be regarded as a realistic depiction of death as it occurs in our western health system today. This is the method of care that our society values and regards as dying with dignity and currently there is a demand for more beds in palliative care. Ken Hillman tells the Four Corners reporters that increasingly patients are dying unnecessarily in Intensive care beds and that the health money is better spent in palliative care rather than in ICU where the cost of a bed for one day can be as high as four thousand dollars as against six hundred dollars for a palliative care bed (A Good Death, 2010).

On the other hand the controversial subject of voluntary euthanasia is not so readily embraced by the news media or the government with Prime Minister Gillard recently admitting she ?found it a very difficult question? (The Age, 2010). It would appear that the Gillard government has no more strength of character in this regard than previous federal governments such as the Howard government which in 1997 overturned the Northern Territories? ?Rights of the terminally ill legislation? and then ?swayed by the virtue and efficacy of palliative care?, ?promised to fund it generously? (The Age, 1997).

Over the recent years the ABC has suffered cuts to funding resulting in a more vulnerable public broadcaster which Errington & Miragliotta (2007, 167) fear is affecting the quality of its programming. There are instances of ?self-censoring? and examples of how the ABC minimizes the broadcasting of potentially controversial content for fear of political pressure from government (Errington and Miragliotta ?2007, 177). The controversial issues were minimized on A Good Death and remarked upon by the online audience with participant Iola calling for a follow up episode of Four Corners where the issues of voluntary euthanasia are discussed and dares the ABC to take the discussion further.

According to the ABC act of 1983, it is the duty of the ABC Board to make sure that the information imparted by the organization is ?accurate and impartial according to the recognized standards of objective journalism? (ABC 2008). Coady describes this ?an attitude geared towards finding the truth? (ABC 2008), and that a range of voices are needed to reflect the diverse, views that arise from some of our most contentious issues. Journalists according to Coady (ABC 2008) must ?challenge, explore and criticise where appropriate?. During the Four Corners story on the 8th February 2010 there was no challenging, exploring or criticizing of the manner in which these patients died. This reflects poorly on the public broadcaster who rather than investigate the topic at hand, has produced a program that has avoided any critique of this contentious societal issue and cowered in the face of perceived political pressures.

The national broadcaster has a role to play in informing the public about how death occurs, for public hangings have been confined to history and very few westerners die at home these days and so ?for most of us the contemporary death bed is until we lie upon our own, a virtual one? (Tercier 2005, 210). ?The spectacle of the deathbed has been removed for our view? and hides itself behind curtains and closed doors of the modern hospitals and even then death is hardly recognizable as was the case when a CBC film crew recorded a man?s death in a palliative care unit in Winnipeg

An enormous audience zoomed in with anticipation on his last moments as his final breaths eased in and out. And when he died, he did it so quietly that the electronic sight and sound machinery didn?t pick up any change. The audience had to be told he was dead. (Ralston-Saul 1997, 73)

What we are witnessing in this documentary is what Illich calls (1976, 204) a ?sociopolitical image of death? where the traditional knowledge of life, health and death is disregarded and people have been made into ?health consumers?. ?Death no longer occurs except as the self-fulfilling prophecy of the medicine man? (Illich 1976, 205).

In A Good Death, Darryl Calver shares his alienation with the audience most of whom lack the knowledge of how to die ?a good death? also. Denied the public conversation, Calver experienced the type of death where ?western man has lost the right to preside at his act of dying? (Illich, 1976, 207). Our medical way of doing death is of recent origins and where the nineteenth century physicians couldn?t cure -they could care (Jupp&Gittings1999, 241).They may have lacked the knowledge, skills and modern drugs to cure diseases but they knew how to give the dying patient and the family moral support and spent much time sitting at the bedside. The authors of Death in England describe this caring approach as ?euthanasia? which in classical Greek terminology meant ?a peaceful, easy and painless death? (1999, 241. Victorian physicians knew much about hospice care for the dying and made sure that death was as easy as they could make it- dignified and comfortable. In 1995, 54 percent of people died in hospital and whereas in previous centuries doctors knew they could not cure diseases and focused on pain relief, the twentieth century medicos became more interested in cures and have increasingly abandoned the incurable (Jupp&Gittings 1999, 271).

An exit ?gentle into that good night? (Tercier 2005, 210) is not how John Peart dies: the former painter and decorators? last days are spent in unremitting nerve pain alternating with the ghastly ?fog? of morphine and frequent bouts of delirium. His pain is unmanageable but even so his relatives do not ask why he is not put out of his misery. By the same token I?m certain they would not let a cat die in so much pain (A Good Death, 2010).

This paper has already noted many of the audience reactions to A Good Death and these are available online (ABC Online 2010). Many of the comments are congratulatory of the program and the ABC, and the fact that there exists such a wide range of opinions about this text leads this discussion to explore a reading and interpretation is made. For example, how do we account for the praise that was heaped upon the ABC and Four Corners by Ms Jones who wrote:

Thank god for the abc! Without programmes such as this one we would all be reduced to morons watching the mindless drivel on other networks. Fantastic programme, very moving and well done.The program was excellent (ABC 2010)

How is the story A Good Death to be understood? Why are there many different interpretations of the content? This episode of Four Corners was produced for a television audience and so an examination of how this medium presents its stories will be undertaken. Fiske & Hartley (2003) have been ?Reading Television? since the 1970s and have concerned themselves with the content and how its meaning is perceived. They continue to discuss the impact and role of television in our lives and suggest that it has become ?part of the public sphere? ( Fiske & Hartley 2003, xv), and an important medium through which we have witnessed the rise of political movements such as feminism, environmentalism and identity politics. Television?s relevance has persisted through the recent decades with the authors claiming that the medium ?responds to the conditions within which it exists? and that reading the television message provides us with a view of larger cultural processes ( Fiske & Hartley 2003, 5). The images on our screens are known to us and television shows us an ?updated version of social relations and cultural perceptions? (2003, 5).

Fiske& Hartley (2003, 8) refer to the subject matter of a television text as the ?manifest content? and in regard to A Good Death the manifest or obvious meaning is that it concerns itself with the final days of four terminally ill patients who are being cared for in the Sacred Heart palliative care unit. A fuller study of this text will reveal its true meaning and how it may be considered as a marker of our current cultural stance around matters of dying and for that ?this reading of this television story must progress from the manifest to the latent content? (Fiske & Hartley 2003, 8).

Chandler (2005) alerts us to the fact that even the most ?realistic? signs are not what they appear to be and that by applying a semiotic analysis we are able to see how reality is constructed and how the codes and conventions of society have influenced this state of affairs. To understand how reality has been made in A Good Death, the signs and signifiers within the text need to be identified along with the rules of society that have led to our interpretation of the text in the way that we have (Berger 1981,111). As has already been discussed the members of the audience have interpreted the text in many different ways but this is to be expected for ?what is signified depends on the culture in which it is being viewed and not by some absolute truth? (Fiske and Hartley 2003, 23).

Many of the viewers of A Good Death do in fact read the text interpreting it as a caring way to die. There are many signifiers to that effect such as the close ?up photo shots of caring nurses attending appreciative patients and lengthy interviews with authoritative doctors. ?It?s a privilege to be with people at this time in their lives; it?s a beautiful place to be actually; it?s a lovely place to work; there?s a lot of life here amongst the death? says Nurse Compton who is supported by her colleague Louise Evans who regards it as a privilege to give patients the ?tender loving care? that nurses in acute care do not have time to deliver. There are many signifiers to our cultural acceptance of this model as a caring and almost pleasant way to die running through the program. The luxurious grounds are well maintained and littered with waterfalls and grassy sunlit areas. There are two black cats ?dex and morph? named after the drugs dexamethasone and morphine who prowl the grounds and bask in the sun and the whole place is embedded with kindly caring relatives from dawn to dusk and beyond if necessary. It is Christmas time at the care centre and while some patients die those still able, join the Christmas choristers and sing: ?Come and behold him born the king of angels, Oh come let us adore him, Christ the lord?(A Good Death, 2010). Such scenes are familiar to this ABC audience many of whom will identify with the Christian ritual and be comforted by its presence at the place of death.

It is very important that we decode this text in order to understand how societal death is represented on the screen for our education around matters of dying has been sorely neglected. Societal rules and regulations around medicine and religion operate in this care unit for the dying, giving power to experts in the form of doctors and ministers of religion. We have learnt how these powerful institutions of medicine and religion operate in our world and understand them to be emblematic of the way our society operates and this is rarely challenged. We are well acquainted and when we become the audience of A Good Death it is difficult for us to see them as they are really; that is authoritative and prescriptive of a certain way of doing death.

As a society we have been educated to believe in the western medical system respecting it for its scientific basis and its skills; this is one of the codes or the almost tenets that operate in our society. The signifiers to our rules are operating in A Good Death: the palliative care centre is managed by Dr Chye who the viewer can recognize as representative of the medical profession. Dressed formally in dark suit and tie with his trademark stethoscope around his neck he performs his rounds of the dying patients and as he does he is followed attentively by nursing staff who attend to his orders. Patients do not complain to him and ask why they cannot have a terminal injection. This act of obedience is understood well by us for as Kellehear (2001) has written we believe that ?the doctor literally knows best and the public as patients ?have become increasingly passive and compliant? (Kellehear 2001).Palliative care is run along the familiar medical chain of command that we understand; this is how it works in the broader society- patients and relatives give respect to medicine and do not challenge its authority. The codes and rules of society are evident on the screen and we the audience understands. The deaths on our screens are representing the model that most of society upholds- the medical model of life.

Chandler (ABC 2005) suggests semiotics can also help us see what is not in the story:

It helps us to unpack the conventions that are involved in order to realise that convention is involved and that news or photographs are not simply reflections of a world, but are a way of building a particular view of the world.

The ways of dying presented in A Good Death is a partisan view of death and fails to discuss the problem that this system has in adequately relieving the pain and distress for many. Dr Roger Hunt ( Kuhse 1994)writes about the ?rhetoric ?reality gap? in regards to palliative care and as a practitioner in terminal care medicine, says that ?it is a rhetorical myth that hospice and palliative care can relieve all the suffering associated with terminal illnesses? (Hunt 1994,121). The producers of A Good Death have failed to deal with this issue of pain control and omit this vital discussion about a system of care that the community and the government are urging more resources be given. The reason for the support given to palliative care both in the community and on A Good Death cannot be adequately explained without an understanding of the role of religion in society. It is very difficult to understand why the palliative care centre fails to bring about a dignified and quick death rather than the painful and prolonged agony that was endured by John Peart in the story without the history of these centres and how religion operates in society. This Four Corners episode is set inside the Sacred Heart Palliative care centre which is part of St Vincent?s Hospital, Sydney which was opened by the Sisters of Charity in 1890 as a dedicated Hospice for the Dying. The early hospices were established by religious groups who would not sanction euthanasia or suicide (Hunt 1994, 128) ?Hospice rhetoric such as hospice care neither hastens nor postpones death but seeks to affirm life so that one can live fully until death occurs.?? This dogma was popular with the right to life groups which campaigned against the practice of ?medically assisted death? (Hunt 1994, 128).

The role of the catholic church in palliative care makes autonomy in death impossible and as Charlesworth has written (Kuhse 1994, 207) the choice that he may wish to make to have an autonomous death or in other words to choose how he might die to is ?counter to the religious beliefs around suicide and is seen as ?cowardice and weakness? (1994, 207) and a failure to put up with the hardships of life. This refusal of palliative care to offer voluntary euthanasia comes from the religious belief that God is the person responsible for your birth and therefore has the ultimate say in when and how you will die. John Peart ? is truly suffering, his pain is excruciating for his growing tumour is occupying a large part of his pelvis, and presses on lumbosacral nerves and he is being made to die like a martyr: this is no way to die and yet this is not challenged. The way that religion understand it ?suicide is not an act of courage? but rather a ?softness of spirit? p207 (1994, Kuhse).

This lack of discussion as to why these patients were denied autonomy in death and were forced to die painful and deaths without dignity was noted and written about online along with a call for the provision of voluntary euthanasia with such sentiment echoing the fact that eighty-five percent of Australians believe that terminally ill individuals should have a right to seek and obtain assistance to end their life with dignity (DWDV, 2006). With such a groundswell calling for a humane way to die when faced with a hopeless terminal illness then surely this must be addressed on such a program that was produced by Four Corners who are beholden to the ABC act to inform the public.

Addressing the Friends of the ABC former presenter of Four Corners Chris Masters said that as a public broadcaster program, Four Corners ?has a legislative responsibility to provide independent news and current affairs,? and its programs must ?inform? and ?educate? (FABC 2010). Masters reminisced about how Four Corners has a history of confronting ?difficult subjects? and performing ?original research? and questions whether this happens anymore saying that ?the game for the news industry is to get away with doing the least amount of research as possible?.

Why the program has been presented this way can be seen as a failure of Four Corners to grapple with the complex subject and may involve issues such as the lack of resources and fear of tackling the subject of euthanasia. However the public broadcaster has failed in its duty to inform the public of death and dying matters adequately and instead has presented the notion of palliative care in its current model as ?a good death?. Death is signified as controlled by medical authorities ? you can?t escape.

References

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Source: http://agooddeath1myblog.wordpress.com/2011/05/22/medically-defined-death/

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