Moving beyond silence and denial
Hidden death
In Molière’s Tartuffe, the sanctimonious
character, veiling his face, hypocritically proclaims “Hide this breast that I
dare not see”. In our western societies, our dying citizens are being covered
under a veil of high-tech medicalization, while resounds the offended protest: “Hide
this death that I dare not see!”
I came to the strong conviction that there is something wrong with the
way in which our western societies marginalize the dying and over-medicalize death.
People are not allowed to die at home anymore. Though the proximity of death is
obvious, they die in a place specialized in healing, called hospital. Why? Why
do we need to try to hold them a little more? Why are we scared when the last
breathings are coming? [1] Truly, it is a disturbing moment, but have we not learned to make our
way through disturbing moments? For example our first job interview, our first
kiss, our life-long commitment, our first experience of injustice or discrimination
… Do we go to the hospital for each of those?! Unendurable death,
why? Have we not learned that we are not all-powerful, that we cannot have
control on everything? Why do we need to ostracize the dying, and thus to add
to their suffering and to ours? What would it
take to move away from this deadly “terror,” as Philip Aries puts it,[2] that surrounds human death in western societies? [3] How could we regain a sense of dying as a
part of life? How could we help bring about an improvement in
holding death? [4]
What would be dying well?
I would like to gather elements
of my conviction of how we could move from silence and denial to a recovery of death,
its place, its sense. Many offer guidelines, presented hereafter, to what
should be a good death. I have two issues with these guidelines. The first one
is their centeredness exclusively on the dying person, denying the perspective
of relatives. I will suggest instead that a good death should integrate the
four-fold relatives’ circles. [5]
The second point of disagreement is the emphasis on the notion of control. I will
suggest that dying, instead, is a time when one acknowledges one’s loss of
control, stretching out one’s hands, letting someone else fasten one’s belt. I
offer five criteria, suggesting that dying well is possible within an attitude
of awareness, acceptance and gratefulness, in a context of socialization and
pain control.
In the first section I offer three narratives where
faith plays a role when death is thought of. The second section should be read with the first as a framework. In it, I
discuss the above five criteria.
Faith as a treasure … or a curse??
To some
people, faith helps to stand in trust and confidence before the perspective of
death. Faith in resurrection appears to be a treasure to face death. It brings
peace and confidence. By contrast, absence of faith in the resurrection
associates with the absence of perspectives.
1 - Philip. “Death is the end of
a wonderful experience. It is sad. It is a great enemy. Death is the final
stage of life. It means I cease to exist. I love life so much! Who wants to
loose something very special s/he loves?” Philip, 59 years old, firmly believes
there is no god and nothing after death. In his family, death was not denied
but was not talked about. There was nothing more to say about it than: “Such
person died and will be buried such day.” Philip recalls crying alone over his
grand-mother’s death. Philip wants to die happy. “If I knew I was dying, I
might be depressed.” He doesn’t want to know about death’s coming; he rather
wishes euphoric drugs be available to him. He believes in “happy drugs” at the
end of life. I find some denial in Philip’s words. The absence of an after-life
perspective makes death a final point, not a transition, not a promise. Whether one believes or not that there is
something after death influences her/his perspective on death.
2 - Peter died this Monday
April 20th 2009 of pancreatic cancer, aged 71. I have known him for
the last six month. Peter had known for month that he was dying. [6] Though his pain was
taken care of and controlled, his dying has been a torture filled with anguish
and guilt. “I am so afraid to be judged a hypocrite”. Peter was brought up in Scotland
3 - Donald. Brian
called David [7]
in tears. His wife just found out that their six-month old fetus was dead in
his mother’s womb. Brian and Laura already have three beautiful children, one
daughter, aged eight, and two sons, aged six and four. Brian calls because they
don’t know how to handle the situation, how to make sense of it. As far as the
medical point of view is concerned, they know exactly what to do. They have an
appointment tomorrow; the dead fetus will be taken out, with no harm for its
mother. But the medical point of view is not the issue. Rather they ask:
"What are we going to do with the dead fetus? How can we mourn? Can we
celebrate a funeral for an unborn fetus?" David is a wise man. He has
experience. Two days later, the family gathers at Avila
A good death
What would a “good death” be? This question only
allows a nuanced answer. There are so many different forms of death, and so
many different ways men and women react at the hour of their death. The perspective from
which this question is asked should also be considered, whether from the dying
person’s perspective or from her/his close circle’s perspective. [8], [9]
The US Institute of Medicine has
defined a good death as "one that is free from avoidable suffering for
patients, families, and caregivers in general accordance with the patients' and
families' wishes."[10]
This statement rightly takes in account patients, families, and caregivers. It
mentions the wishes, implying that they have been expressed and are
known. I would add that a good death requires an attitude of awareness, acceptance
and gratefulness, in a context of socialization and
pain control. I will explain what I mean by these
words, and explore what may oppose a good death.
· Awareness is the knowledge that death is there.[11]
Awareness from the dying as well as from the four-fold circle is profitable.
· Acceptance comes with peace and understanding that death
is happening. Acceptance holds hope for a future and
manifests openness to eternal love and relief. Acceptance from
the dying as well as from the four-fold circle is profitable.
· Gratefulness is such a beautiful attitude of
thankfulness for one’s life. Gratefulness reaches beyond the present moment, to
the entire life. Gratefulness raises life to an acknowledged gift. Gratefulness
is relational to others and to God. Gratefulness from the dying as well as from
the four-fold circle is profitable.
· Socialization diminishes anguish by helping the dying
to feel loved. Socialization allows completing relationships including those
that need reconciliation. Socialization should not be invasive, as the dying
might want to pass away alone.
· Pain control is essential, though it does not suffice
to avoid suffering, for suffering is larger than pain. Pain prevents socialization and gratefulness, prevents to live the
moment and makes one wish to hasten death.
This conditions are rarely gathered. There are several hindrances to these conditions. I would like to list
obstacles: over-medicalization – lack of information, unexpectedness.
·
Death can be
predictable or unexpected. Yet the dramatic developments of medicine over the
past decades have significantly decreased the incidence of sudden death in
developed countries. Unexpected death does not allow awareness, nor allows
dying to be a process.
·
Absence of
information raises incertitude and anguish.
·
Over
medicalization exaggerates the attempt to heal, and therefore opposes
acceptance and awareness of death.
“This is
right”
As a conclusion, I would like to illustrate my suggestion with the
example I best know, the example of my own family. I come from a large family,
my mother being the oldest of twelve children. Both her parents died at home in
1992. I was there. Everyone was there, respectfully, deeply moved. Pain was
controlled. Death was coming, to the knowledge of all. My grand father, who
died first, talked to his wife in his last moments: “You made me happy.” When
she was dying, two month later, we talked. She and I said farewell. She took my
hand. She had had a beautiful life, she has been a loving and loved person. I
thought to myself: “This is right, this is the right way to die.”
[1] In this text, « we » stands for
« our western societies.»
[2] Philippe Ariès, Western Attitudes Towards
Death from the Middle Ages to the Present, Baltimore:
Johns Hopkins, 1985. Ariès shows that at the very
foundations of Western culture, death used to be too common to be frightening;
each life was quietly subordinated to the community, which paid its respects
and then moved on. Ariès identifies the first major
shift in attitude with the turn of the eleventh century when a sense of
individuality began to rise and with it, profound consequences: death no longer
meant merely the weakening of community, but rather the destruction of the
self. Hence the growing fear of the afterlife, new conceptions of the Last
Judgment, and the first attempts (by Masses and other rituals) to guarantee a
better life in the next world. In the 1500s attention shifted from the demise
of the self to that of the loved one (as family supplants community), and by
the nineteenth century death came to be viewed as simply a staging post toward
reunion in the hereafter. Finally, Ariès shows why death has become
such an unendurable truth nowadays, how it has been nearly banished from our
daily lives, and points out what may be done to "re-tame" this secret
terror. As Ariès sorts out the tangled
mysteries of our accumulated terrors and beliefs, we come to understand the
history - indeed the pathology - of our intellectual and psychological tensions
in the face of death.
[3] Lucy Bregman, Beyond Silence and Denial: Death and Dying Reconsidered. Louisville, KY: Westminster, John Knox. 1999.
[5] I
suggest a four-fold circle of relatives: family, friends, pastoral, and medical
(the words order is fortuitous, not hierachical).
[6] Dying is not an instant but a
period of time. I hold this conviction from my sacramental experience: a
sacrament is not limited to the liturgical instant, but is a process by which
one prepares one self. For that reason, if someone died in the middle of one’s
preparation to baptism, one would be buried as baptized Christian disciple, by
virtue of what we call a « baptism of desire.». Baptism of desire (Baptismus
Flaminis) is a teaching of the Roman Catholic Church explaining that those
who desire baptism,
but are not baptized with water through the Christian ritual, because of death,
nevertheless bring about the fruits of Baptism. Hence, the Catechism of the
Catholic Church observes, "For catechumens
who die before their Baptism, their explicit desire to receive it assures them
the salvation that they were not able to receive through the sacrament."
Applying the same reasoning to dying, I am aware, is considering dying as a
sacramental moment. Such is my intention.
[7] David, 74 years old, has been
a Catholic priest for 45 years.
[8] A good death, according to John T. Dunlop, M.D., Center for Bioethics &
Human Dignity, Zion Clinic, Illinois. This description of a good death makes explicit mention of the faith.
It is much centered on the dying person only.
· A good death is
the natural trajectory of faith commitments made earlier in life.
·
… may require advance planning.
·
… has completed relationships including those that need reconciliation.
·
… comes after we cease grip to the things and values of this world and
increasingly embrace eternity.
·
… comes to the one whose spirit has been enriched by the difficulties of
the end of life.
·
… will often come after a carefully considered decision not to pursue life-sustaining
treatment.
·
… is peaceful, for the dying person knows that it will lead to
resurrection and eternal life in God’s presence.
[9] Principles of a good death,
according to Richard Smith , BMJ 2000; 320:129-130 This
version expects a lot of “control”. It almost looks like a good death controls
everything until (but when is that??) its time to let it go.
·
To know when death is coming, and to understand what can
be expected
·
To be able to retain control of what happens
·
To be afforded dignity and privacy
·
To have control over pain relief and other symptom
control
·
To have choice and control over where death occurs
(at home or elsewhere)
·
To have access to information and expertise of whatever
kind is necessary
·
To have access to any spiritual or emotional support
required
·
To have access to hospice care in any location, not only in
hospital
·
To have control over who is present and who
shares the end
·
To be able to issue advance directives which ensure wishes
are respected
·
To have time to say goodbye, and control
over other aspects of timing
·
To be able to leave when it is time to go, and not to have life
prolonged pointlessly
[11] I try to avoid expressions like “death will
come” “or death will happen” which make death an instant instead of a process.
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