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Friday July 30,2010

Care of the Dying Part 2: Encouraging conversations about death

by Linda J. Austin

Discussing the topics of death and dying can be difficult, and can touch on a spectrum of fears. A lack of communication about dying may be one of the factors underlying the "growing body of research suggesting that the dying patients often do not get what they say they want." Footnote 4 We human beings conceal the extent of our emotions, feel confusion about death and dying, fear stigma or embarrassment from initiating conversations about death, and face the weight of cultural prohibitions linked to dying, all of which stop us from raising the topic with loved ones. Footnote 5 Talking about death can make us feel vulnerable and defensive. Footnote 6 Defensiveness, in turn, impairs our ability to communicate meaningfully about any topic,Footnote 7 in particular the inevitable prospect of dying.

In the United States, the health care system adds a layer of factors that can inhibit conversations about the dying process. For instance, end of life conversations have not been incorporated as a routine part of care. Footnote 8 This may be due in part to the lexicon used to describe common illnesses. As Susan Sontag noted, war metaphors have long constitutes a large part of the language that we use to describe the progression of certain types of disease. A description of the plague of 1630 reads:

The plague which the Tribunal of Health had feared might enter the Milanese provinces with German troops had in fact entered, as is well known; and it is also well known that it did not stop there, but went on to invade and depopulate a large part of Italy. Footnote 9

A more recent description of AIDS has a similar feel:

The invader is tiny, about one sixteen-thousandth the size of the head of a pin . . . Scouts of the body's immune system, large cells called macrophages, sense the presence of the diminutive foreigner and promptly alert the immune system. It begins to mobilize an array of cells that, among other things, produce antibodies to deal with the threat. Single mindedly the AIDS virus ignores many of the blood cells in its path, evades the rapidly advancing defenders and homes in on the master coordinator of the immune system, a helper T cell . . . Footnote 10

The notion of rallying the body's defenses in order to fight an invading enemy of disease may feel empowering to some extent. However, when disease is characterized as an enemy to be battled by the weapons of the medical community, then death can only be characterized as defeat. Death is removed from its position as the inevitable, natural conclusion of life, and becomes something to be staved off at all costs. Once death becomes the enemy, discussing the subject raises fears of causing pain and bearing bad news, further deterring health professionals Footnote 11 and others from broaching the subject.

The United States' health care system offers no significant compensation for psychosocial conversations Footnote