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Different ideas of "good death" may influence the effectiveness of end-of-life care in patients with different ethos. This study aimed to identify the influence of believing in individual life after death on "good death" models.
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Semi structured-interview to 8 persons, 4 believers and 4 non-believers in individual life after death from the general Italian population. Analysis of the transcribed text according to the method suggested by Mc Cracken.
The analysis has shown a diverse and coherent conceptualization of death according to whether the subjects believe or not in individual life after death. Believers, for whom death marks the passage to a new dimension, prefer to be unaware of dying, while non-believers, for whom death is the end of the individual, prefer to be conscious until the very end of life. However some important aspects in common have been identified, i.e. having close people nearby, receiving assistance from experts, or the preference for a soft atmosphere around the dying person.
There are aspects in common and aspects in contrast between believers and non-believers in individual life after death: while sharing many aspects of what a "good death" ought to be, they have opposite stands on being aware of dying. A plurality of models should be foreseen, accepting, in this case, their practical and theoretical implications.
Death is "good" when it fits with the role given, acknowledged and accepted by the dying person . One of the main objectives of a culture is re-orienting death towards life: each person's death threatens society's cohesion by casting a shadow on the feelings of safety and continuity on which every human being bases his/her life and finds support and consolation .
This event is developing symmetrically with the ever more intrusive presence of medical technology, specially when life is seriously threatened, and the more and more turning of people to a medicine which has grown into a total institution . Doctors can better foresee the imminence of one's death, which today is mostly a consequence of chronic degenerative diseases. However, this fact does not help in understanding death. Medicine is defining for, and unwittingly imposing on the dying a new role, and understanding this is crucial to correctly and coherently provide that end-of-life assistance that medicine today is called to do . The attempt to re-orient death toward life, in order to mitigate the dying anguish and the relatives' grief, is recognizable in the widespread disposition to encourage terminal patients to feed on their expectation of recovery, and to hide or even deny the irreversibility of their disease [8, 9].
But being consistent with this character, i.e. being free to make choices, and at the same time being protected by the presence of death sound as contradictory. An explicit good death model actually doesn't exist but the medical (namely palliative care) literature converges towards some specific aspects that contribute to define a death as a good one: symptoms control, careful consideration for the social and relational context, preparation to die, and existential well-being [12, 13]. Such elements of good death do not overlap completely between operators and patients [14, 15]. The health professionals, in fact, highlight the conception of dying as a process which implies a graduality in end of life. This gradualness is not welcomed as much by patients who seem to prefer a sudden death .
This study, in order to bring elements together for a more general debate on this subject, aims to: 1. examine the influence of believing in individual life after death on "good death models"; 2. identify how the main connotations of dying are organized in "good death" models. The identification of possible different ideas of good death could be useful for providing the patient with correct end-of-life care.
For a stronger validity of the analytic process, the analysis of the text was carried out autonomously by each author in five successive steps, each of which represents an increasing level of generalization . By this way each author identified some main categories referring to key elements of good death. A further level of analysis, was then carried out, comparing among the researchers their analytic processes, and achieving a consensus on what ought to be held as representative of the interviewees' points of view and beliefs. According to usual qualitative methodology, the analysis was performed after each interview, allowing us to decide to interrupt the accrual when we considered the constitutive elements of the main distinction (believer/non-believer) sufficiently defined.
"I believe in life after death. Dante Alighieri was certainly one of the most concerned with this problem, creating all that opera, but the best thing he said is that all the dead would have wanted to meet, and realize what that new world was like, and, above all, would have wished to meet again with their moms" (B1)
If something of me survives after death, I could return and see the people who are dead before me: if all this were true, then may be that someone would like to come back....I feel more comfortable thinking that there is nothing. I feel this is a more coherent way (NB1)
On the contrary the individual dimension for NB is defined by temporal limits, therefore transitory and precarious, precious and unrepeatable. Individuality becomes completely nullified in death, either as a return (re-absorption) into the biological cycle of life, or as a melting into a sort of 'universal soul': two very different interpretations, but reaching the same conclusion.
"I would like to "live" that experience totally aware. It would give more sense to my life in the same way as the choices I made in my life. Perhaps death is the most important moment of life and I would like to "be there" as much as possible" (NB1)
"I can say that there is hope for another life; but I can also say that there is the hope not to die right now...to postpone death... I believe that everybody has the hope of recovery; believing in miracles lies in everybody. So, there is the hope of a miracle also in someone who knows that he will never recover...saying "let's bet"...'(B3)
"I don't think I have any hope beyond death. I hope I'm well until that exact moment when I have to go. Not believing in anything else beyond life and not knowing anything, I don't have any hope either. I think that hope does help believers, but if someone isn't a believer, hope is not important." (NB2)
The attitudes regarding the corpse's treatment (cremation or deposition/conservation in a coffin) suggest an intention to witness either the disappearance or the permanence of the individuality of the deceased. The B stand regarding cremation relates to their need to maintain individuality after death.
The meaning of death, handed down by past generations through religion is not satisfactory for NB, but they also feel that a secular approach to dying and a matured tradition outside a religious conception of life, is lacking.
The answers show two different and coherent conceptualizations of death, according to whether the subjects believe or not in individual life after death. For NB death marks the end of the individual, while for B it marks the passage to a new dimension. Each of these assumptions determine two different models of 'good death'. The main difference between NB and B attitudes refers to being or not being conscious/aware of the moment of death. B prefer to be unconscious when death comes. They do not fear the next world, but rather the passage, the crossing over the boundary: a mysterious but actual process, that take place in time and space. This attitude coexists with the hope of a miraculous delay of death itself, which seems to conflict with the conviction of reaching the true, best and perfectly happy life in the union with God.
The Hebrew/Christian tradition, to which the B interviewed belong, does not provide instructions on how to face this very passage, nor does it describe the process, as it is done in other religions like, for example, Tibetan Buddhism or the ancient Egyptian religion . What happens between the moment of death and the one of re-birth is obscure and, thus, generates anguish. The NB attitude seems, instead, to appeal to the epicurean sentence: "If I am, death is not; if death is, I am no longer: why, then, fear death?". NB reveal also a different aesthetics concerning death and dying. Things, objects, the environment become almost gifts that the dying person leaves to the living, gifts precious because intrinsically beautiful, thus assuming an autonomous importance. B, on the other hand, underline "decorum" as appropriate style of both the dying person and the bystanders. The NB interviewees, even if perfectly aware and proud of their own ethos, acutely felt the lack of a socially recognized and accepted secular way of dying. Secular rituals are lacking, and realizing scenes of death which contain and respect their conception of life is difficult when not totally impossible.
The palliative care aspiration to a death without delay and without anticipation demands the active participation of the dying person him/herself in order to get the social and biological death to coincide. This concept of coincidence between the social dimension and the biological one is crucial . When the dying person before his/her decease loses what characterizes the social life of an individual, in particular consciousness and self-awareness, that lack of dignity, which common sense perceives as a negative value, does ensue. Thus, death becomes 'bad' . In fact the intentional prolonging of this condition (the artificial prolongation of biological life at the end-of-life) is seen as an unjustifiable violence.
This study highlighted the existence of some different constitutive features of "good death" focusing on the distinction between believer and non-believer in the maintenance of individuality after death, and we feel that this difference is a major one, at least in the Italian cultural context and deserves further research. The awareness of these differences may help palliative care professionals meet the real needs and expectations of terminal patients.