The grief process for patient, family, and physician [review; review, tutorial] [see comments]

              S28 • JAOA • Supplement 3 • Vol 102 • No 9 • September 2002 Bruce • The grief process for patient, family, and physician
To grieve, from the Latin gravis, is to
carry the heavy burden of a loss.
Grief is commonly defined as a state of
deep mental anguish commensurate
with many difficult emotions such as
sorrow, heartache, anguish, pain, dis-tress,
misery, and woe; it can be effec-tively
understood as a process encom-passing
a much broader range of
experience. Initiated by loss, grief is a
natural process of adjustment to a new
state of affairs in a person’s life. The grief
process represents movement from life
through death and back into life again.
Grief will begin with any manner of
loss, including decreased function or
role, loss of assumed health, or dimin-ished
dream of the future.
For the cancer patient and all those
related in the system of care, the grief
process may begin at the time of diag-nosis—
or even before that point. Every
change in status will alter the grief tra-jectory
to some degree.
It is important to understand both
the process of grief and the practice of
mourning. Human grief is a natural,
inevitable neuropsychobiological response
to any kind of significant loss. Mourning
is the outward, shared expression of that
experience. Grief is a universal phe-nomenon,
whereas mourning assumes
many different cultural expressions. To
grieve and to mourn are natural and
healthful processes, whereas to suppress
or forgo grief and mourning is unnatural
and harmful. Because normal practices of
mourning vary across cultures and
mourners bring their own respective life
history and context to the grief experi-ence,
empathy, attentiveness, and respect
are of primary importance in responding
to grief and mourning in patient care.
What would be some of the
common and normal grief reactions?
Every one of us has experienced them
to some degree in the face of loss. In the
emotional realm, there may be deper-sonalization,
disbelief, sadness, anger,
guilt and self-reproach, panic, anxiety,
loneliness, listlessness and apathy, shock,
yearning, numbness and, depending on
the circumstances, relief. Physical sensa-tions
might include muscular weakness,
fatigue, tightness in the chest and throat,
dry mouth, nausea, and sensitivity to
noise. The griever may become preoc-cupied,
and thought processes can
become confused. There may be a sense
of timelessness. If someone has died,
there is often a sense of presence, or of
seeing or hearing the deceased. There
may be sleep and appetite disturbances,
social withdrawal, sighing, searching and
crying, restless overactivity, reminiscing
and laughing, treasuring objects that
belonged to the deceased, or avoiding
such reminders.1
However it proceeds, the grief pro-cess
poses a challenge to human systems
at each level—through personal, inter-personal,
family, and caregiver systems.
Inherent in this process is the demand
for change and the substantial potential
for growth—and/or decline. Loss dis-rupts
equilibrium, and subsequent read-justments
are multifaceted and complex,
involving somatic, psychological, social,
cultural, spiritual, and historical compo-nents.
Practically speaking, this disrup-tion
and readjustment mean that besides
somatic changes due to illness, one must
be aware of a patient’s grief-associated
symptoms.
The impact of disease or loss on total
functioning of a patient or family system
must be considered. How is self-concept
affected? Identity, expectations, and sense
of the future all may need adjustment.
What is—or was—the role of the patient
in the family system? This may require
change. A loss of roles, accustomed activ-ities,
capabilities, and personal dignity
may occur. In a culture strongly empha-sizing
health and youth, disease and
demise are very isolating.
Many people see suffering and loss
as spiritually related. Some may have a
feeling of being punished or forgotten
by God, or of being purified and
strengthened. Because a strong connec-tion
exists between spirituality and well-being,
it is important to allow or provide
for spiritual exploration and support
during grief. It is also important to ask
what personal history of losses provides
a context or foundation for this current
one. What is the family context, com-munity
context, or racial-ethnic context?
What “undigested” grief is present that
will become a part of the matrix for this
new experience?
In the grieving process, patient, family, and health professionals have the same
needs—rest, relaxation, nourishment, a sense of security, trust, hope in the
future, and humor among them. Grief, defined as a shared, universal, and nat-ural
neuropsychobiologic expression in response to loss, is distinct from
mourning, a practice that varies in expression across diverse cultures. To aid in
an understanding of grief and its effects, the author looks at the models for grief
proposed by Kubler-Ross, Bowlby, Parkes, Worden, and Wolfelt. Addressing
patients’ concerns requires physicians be empathic, attentive, and respective and
have willingness to take time, be present, and listen.
(Key words: bereavement, grief, mourning)
Correspondence to Christine A. Bruce, MDiv, 1023
Kipling Rd, Rydal, PA 19046-3339.
E-mail: ricknchristie.bruce@prodigy.net or
aocounseling@prodigy.net
The grief process for patient, family,
and physician
CHRISTINE A. BRUCE, MA, MDIV, LMFT
Other factors contributing to a grief
process include the suddenness versus
the expectation of loss, the cause and
course of an illness, and whether there is
a sense of hope and purpose through it
all. Especially difficult is “ambiguous
loss,” essentially living with frozen grief
as in brain injury, dementia, serious
addiction, or mental illness. Because the
person being lost is neither clearly absent
nor clearly present, it can be very difficult
for survivors to know how to move
through the grief.2
Major models for grief
Various models for the grief process have
been proposed and used over the past
half century as thanatology has devel-oped
as a field of study. Most notable
have been the works of Kubler-Ross,3
Bowlby,4 Parkes,5 Worden,6 and Wolfelt.7,8
Elisabeth Kubler-Ross, MD, psychi-atrist
and internationally known thana-tologist,
published her seminal study in
1969, titled On Death and Dying.3 The
cover to the first edition included the
explanatory subtitle, What the Dying Have
to Teach Doctors, Nurses, Clergy, and Their
Own Families. The work was the result
of a seminar that began in 1965 at the
University of Chicago Billings Hospital,
when four theological students
approached Kubler-Ross for assistance
in a research project on “the crisis of
death in human life.” Together they
determined the best way to study death
and dying was to ask terminally ill
patients to be their teachers, through
observation and interview.
The observations of Kubler-Ross
now form the classic five-step paradigm
for the grief process: denial, anger, bar-gaining,
depression, and acceptance. She
described the five stages as “coping
mechanisms” that people go through to
deal with extremely difficult situations.
These stages were at times overlapping
or coexisting, but, in her model, pro-gressive.
In addition to these central
stages, the model included stage-bridging
mechanisms of partial denial and
preparatory grief. Included in the accep-tance
stage were Freudian concepts of
decathexis, or withdrawal of emotional
energy from the lost object, and recathexis,
or reinvestment of that energy. In regard
to a dying patient, this withdrawal sig-naled
the end of the struggle to sustain
bodily life and the investment of energy
in letting go and moving on.
Kubler-Ross3 further observed, “the
one thing that usually persists through all
these stages is hope.... It’s this glimpse
of hope which maintains them through
days, weeks or months of suffering.” She
defined this glimpse of hope as “the
feeling that all of this must have some
meaning, will pay off eventually if they
can only endure it for a little while
longer.” Interestingly, patients she inter-viewed
showed the greatest confidence
in those physicians who allowed them
to express and maintain their hope, in
whatever form.3 Even with acceptance
of a terminal diagnosis, there can be the
hope that one may continue to live to
the end in a meaningful, zestful way,
relating to life and being a unique per-sonality
through the moment of death.
British psychiatrists John Bowlby
and Colin Murray Parkes collaborated
on the grief process in the 1980s, bringing
together insights from Bowlby’s Attach-ment
Theory4 and Parkes’ studies of
human information processing.5
Together they reformulated Kubler-
Ross’s five stages into four phases of grief
and observed that these phases were not
always linear but could recycle through
recollection, or some triggering experi-ence
or anniversary reaction. One who
grieves can travel around and around
the process before emerging, so there
exists a greater need to sustain caregiving
rather than viewing grief as a series of
progressive stages with a predictable and
orderly end.
The initial phase of this model, that
of shock and disbelief, discards the term
denial, with its pathologic connotations.
Instead, there is insight that the human
organism does what it needs to do to
cope with reality. Body, mind, and soul
adjust to the distressful situation by
closing down to protect and rebuild in
small increments. Reality is set aside, in
part, and allowed slow entry into the
self-system. In this phase, there is a strong
but adaptive need to withdraw, to be
numb, and unresponsive.
Phase two is called searching and
yearning. While in this phase, a person
will attempt to undo or retract the dis-tressful
reality with thoughts like, “This
couldn’t have happened! Why this? Why
us? Why now? If only...!” The affect is
angry, agitated, and frantic.
The third phase of grief, disorgani-zation
and despair, represents full pene-tration
of the distress and of facing the
loss. In this phase, one might hear state-ments
such as “My life is over. I just don’t
care anymore. I can’t go on.” Depres-sion,
disorganization, absentmindedness,
and apathy exist. These responses,
normal in this phase of grief, should be
supported and not confused with a
pathologic process.
Finally, the fourth phase is that of
rebuilding and healing, in which the griever
will begin restructuring and reorganizing
to proceed. One begins to take on the
changes and move forward in life; the
loss is no longer defined in terms of the
self. Rather, there is a renewed sense of
identity, which goes beyond—and is
greater than—the loss. There will be
more energy and sociability and an
ability to view one’s grief in a larger per-spective.
J. William Worden, PhD, psy-chotherapist
and researcher in the field of
terminal illness and suicide, is professor
of psychology at Harvard Medical School
and director of an extensive National
Institutes of Health research project on
life-threatening illness and life-threat-ening
behavior. His text, Grief Counseling
and Grief Therapy,6 grew out of this pro-ject
and his own clinical practice. Worden
views mourning—the adaptation to
loss—as involving four basic tasks, the
completion of which are essential for a
person and/or family system to come
back into equilibrium and complete
bereavement. These tasks need not follow
a specific order, but can be concurrent,
cyclical, or overlapping, and will be
worked on with effort by a griever until
balance is regained. Worden’s four basic
tasks of mourning are the following:
  to accept reality of the loss;
  to experience the pain of grief;
  to adjust to an environment in which
the deceased is missing; and
  to withdraw emotional energy and
invest it into another relationship.
Worden speaks of particular diffi-culty
with the fourth task. It is here that
grief most often remains unresolved, as
the mourner continues to hold onto a
Bruce • The grief process for patient, family, and physician JAOA • Supplement 3 • Vol 102 • No 9 • September 2002 • S29
past attachment rather than form new
ones. In doing grief therapy within this
model, it is important to facilitate emo-tional
reconceptualization of a lost love
into memory so that emotional space will
be created for new relationships.
Worden’s expected time frame for
full resolution of grief is 1 to 2 years, a
projected point where natural sadness
of having loved and lost will no longer
have the initial wrenching quality. If
progress through these developmental
tasks is arrested at some point, the grief
experience will become intensified such
that the griever becomes overwhelmed,
and a pathologic process appears.
Worden’s 12 clues toward diagnosing
pathologic grief6 (Figure 1) might indi-cate
a need for treatment to resolve
chronic, delayed, exaggerated, or masked
grief reactions.
Alan D. Wolfelt, PhD, is the most
recent major voice in the field of thana-tology.
He is the founder and director of
the Center for Loss & Life Transition in
Fort Collins, Colorado (Figure 2), and is
known internationally as a grief educator
and care provider. Whereas previous
models have emanated from the modern
perspective that if we know what is
wrong, we can fix it, Wolfelt’s approach
is much more postmodern, that is, each
person’s grief experience is unique and
there are no predictable or orderly stages.
The mourner is the teacher, rather than
the recipient of another’s expertise;
griever and supporter go on a journey
of discovery together.
Wolfelt’s approach is therefore
much more experiential and narrative;
he teaches that caregivers to the
bereaved should “companion,” rather
than treat people in grief. In his words,
“companioning” is about honoring the
spirit, being curious, learning from
others, walking alongside, being still, lis-tening
with the heart, bearing witness
to the struggles of others and being pre-sent
to their pain, respecting disorder
and confusion rather than imposing
order and logic. “Companioning is about
going to the wilderness of the soul with
another human being; it is not about
thinking you are responsible for finding
the way out.”7
“If you love, you will mourn,” is a
foundational understanding in Wolfelt’s
philosophy. Rather than viewing grief
as a disease state from which to seek
recovery, he sees the pain of loss as an
inherent part of life resulting from the
ability to give and receive love. Since
everyone is changed forever by their grief
journey, concepts like reestablishment,
recovery, and resolution are not adequate
to describe what needs to happen in grief.
You don’t “get over it,” but you learn to
live with it and reconcile yourself to it. In
Wolfelt’s grief work, one moves toward
the pain in order to walk through it (vs
work through it).
Still, the connection between
Wolfelt’s philosophy and the earlier
models is apparent. In place of the four
phases of grief (cf Bowlby-Parkes), Wolfelt
describes seven dimensions of grief (eg,
thoughts, feelings, and behaviors), all or
any of which could come into focus at
any time. These dimensions are:
  shock-denial-numbness-disbelief;
  disorganization-confusion-searching-yearning;
  anxiety-panic-fear;
  physiologic changes;
  explosive emotions;
  guilt and regret; and
  loss-emptiness-sadness-depression.
Wolfelt sees six central needs of grief (cf
Worden’s four central tasks), which are
more experiential than task-oriented, and
with a more relational, tribal, systemic
view of the self. Four are familiar:
  to inwardly experience and outwardly
express the reality of loss through
mourning;
  to tolerate the pain of grief while
caring for oneself;
  to convert the relationship with the
lost person from presence to memory
(relocation of the relationship in the heart
of love vs decathexis or withdrawal), and
  to develop a new self-identity based
on life without the person who died,
taking on new roles and exploring pos-itive
aspects of oneself in the change.
New to the process are the fol-lowing:
  to relate the experience of loss to a
context of meaning, telling a story about
the loss until it becomes “the story” that
makes some sense of it all, teaches some
lesson, or provides some doorway to
continuance; and
  to develop an understanding,
enduring support system, which will
provide a strengthening brace while
healing takes place in the months and
years ahead. This support system com-prises
fellow human beings who will
companion the griever and encourage
self-compassion whenever a normal resur-gence
of intense grief occurs.
Wolfelt’s system also includes five
signs of complicated grief, which may
indicate a need for professional assis-tance.
These behavior patterns include
postponing grief by indefinitely delaying its
expression, displacing grief by directing
intense feelings elsewhere, replacing grief
by prematurely reinvesting feelings in
another relationship, minimizing grief
through rationalizations, or somaticizing
grief by converting feelings to physical
symptoms.8
S30 • JAOA • Supplement 3 • Vol 102 • No 9 • September 2002 Bruce • The grief process for patient, family, and physician
Checklist
  The griever cannot speak of the
deceased without experiencing
intense and fresh grief.
  Some relatively minor event
triggers an intense grief reaction.
  Themes of loss arise in a clinical
interview.
  An unwillingness to move
material possessions of the
deceased.
  Medical symptoms like those of
the deceased appear.
  Radical changes in lifestyle occur
after bereavement
  A long history of subclinical
depression or false euphoria is
present.
  A compulsion to imitate the dead
person is present.
  Self-destructive impulses appear.
  An unaccountable sadness occurs
at a certain time each year.
  A phobia about illness or death
related to the deceased is present.
  Knowledge of circumstances
surrounding the death
Figure 1. Worden’s 12 clues toward diag-nosing
pathologic grief. (Source: Worden JW.
Grief Counseling and Grief Therapy: A Hand-book
for the Mental Health Practitioner. New
York, NY: Springer Publishing Co; 1982.)
Important issues for caregivers
The individual, intrapersonal experience
of grief is similar across cultures, but
bereavement practice varies profoundly.
A grief reaction on the anniversary of a
loss event, for example, seems to be part
of the circadian, somatic nature of grief
rather than purely culturally conditioned.
This author observed this response in a
young child who had no coaching to
expect such a resurgence of grief at a par-ticular
time, and whose parents were
surprised by the anniversary as well. In
contrast, ways in which a person
responds to—or expresses—grief feel-ings
are qualified by culture as well as
experience.
A good question to ask in care-giving
is, What is required or expected
by the griever’s culture in this situation?
Grief practices across cultures serve an
important purpose, and it is important to
honor them. Monica McGoldrick, LCSW,
PhD, is Director of Family Training at
Rutgers Medical School, University of
Medicine and Dentistry of New Jersey,
where she has developed training on
ethnic patterns for the medical school
curriculum. McGoldrick, coeditor of the
text, Ethnicity and Family Therapy,9 has
posed these questions for cross-cultural
sensitivity:
  Are certain types of death particu-larly
traumatic for this sociocultural
group?
  What rituals are prescribed for man-aging
the dying process and aftermath?
  What beliefs exist regarding what
happens after death?
  What emotional expressions are
appropriate in response to this loss? For
example, a contributing author observed
that Puerto-Rican traditions such as
crying, screaming, and hysteria are
common, expected, and even respectful
ways of mourning at a funeral. In con-trast,
an American family of British
descent believes it is important not to
show grief in an outward display of emo-tions,
but to keep a “stiff upper lip.” It is
deemed “responsible” to keep personal
problems to oneself, and not be “a
bother” to anyone. A caregiver unaccus-tomed
to either of these two extremes
could easily misinterpret and patholo-gize
a culturally normal response in
attempting to fix the problem.9
It will be helpful if the caregiver
knows when to be watchful for signs of
complicated grief. Perhaps the patient or
survivor held unrealistic expectations
about life and death; maybe a support
system was or is lacking. If the illness or
manner of death is stigmatized, or if
death marks the end of an ambivalent
or abusive relationship, there may be
trouble with grief.
Prolonged dying also places a great
strain on caregivers, depleting the system
and predisposing survivors to illness on
the rebound. Is substance abuse or other
compulsive behaviors present? These
factors represent a built-in foundation
for complicated grief. A history of mul-tiple
or unexpressed losses can also
expand a traumatic grief. Was there no
choice about seeing the body? Is litigation
involved? Does the survivor experience
consuming guilt or blame?
Was the loss abrupt and/or trau-matic?
New research into traumatic loss
indicates that such grief can be pro-longed,
pervasive, and debilitating
without indicating a psychiatric disorder.
Grieving survivors of trauma victims
should be reassured that the intensity of
their feelings is entirely normal and
acceptable. According to a recent pilot
study,10 most of those who grieve need
only time and sympathetic company.
However, long-lasting grief with trau-matic
loss can resemble a traumatic stress
response and may respond to treatment
modalities recommended for posttrau-matic
stress disorder or depression.
Family caregivers and survivors will
not be alone in experiencing the pain of
loss. Grief will impact health professionals
caring for those who suffer and die. Basic
issues intrinsic to the helping professions,
which grief will activate, must be
addressed. First, there is the reality of
attachment and loss for anyone who is
empathic. A healthcare professional may
say inwardly, “You’ve engaged me. I’ve
invested myself in you. Now you’re
leaving.” Then, there can be the narcis-sistic
injury of, “My job was to heal you,
but I can’t, and that feels terrible.”
Frustrated altruistic strivings may
include, “I’m in this business to give life
and to help others, so my energies must go
to the living, not the dying.” There may be
personal issues that are brought to the
surface, or a crisis of faith brought on by
particular circumstances: “This one is too
close to home!” or “Why this, God?” It
may be a matter of grief overload, as
observed in healthcare professionals
working in hospice or emergency trauma
situations: “Now this is just too much!”
Any of these natural responses would
lead us to do exactly what the patient fears
the most and needs the least, that is, to
withdraw emotionally and physically,
become curt or perfunctory, and abandon
bedside manner. What can one do?
Opening up the discussion
It is important for those of us in health-care
professions dealing with grief and
Bruce • The grief process for patient, family, and physician JAOA • Supplement 3 • Vol 102 • No 9 • September 2002 • S31
Resources
  Association for Death Education and Counseling, an
interdisciplinary organization formed to assist professionals
and lay people in the field of dying, death, and
bereavement.
http://www.adec.org
  Center for Loss & Life Transition, Alan D. Wolfelt’s
organization for grief counseling.
http://www.centerforloss.com
  National Cancer Institute, a resource for patients, families,
caregivers, and health professionals.
http://www.cancer.gov/cancer-information
Figure 2. Useful Web sites
loss to explore our own “grief land-scape.”
Ask yourself, “What are my
issues with loss at this point in my life?
What is my history with grief? What
losses have impacted me, which still exert
pressure on my ability to cope? What
does my belief system tell me about the
meaning of suffering, of life, and of
death?” All this can take time, but it is
worthwhile to assess periodically, to
observe and acknowledge losses, pres-sures
and unreconciled grief in one’s life.
In fact, it can be very encouraging to look
back from a new perspective year by
year and see how things change. Those
who develop a measure of comfort with
life and death issues, and learn how to
live with their own grief and losses, will
become more capable of administering
effective, life-giving care, even to
someone who is dying. Their person and
presence will be able to instill confidence
and hope that is genuine and based in
reality.
What are some of the major con-cerns
of the consciously dying person?
Often, there is concern or even guilt
regarding those who will be left behind.
There is fear of:
  losing control,
  dignity,
  self-determination,
  ceasing to be,
  being in pain,
  being alone,
  the unknown.
Responding to these concerns
requires having an attitude of empathy,
attentiveness, and respect, and a will-ingness
to take time, be present, and
listen. Nonverbal communication is
important. Sit down. Invite sharing: “You
may have some questions.... Tell me your
thoughts on this matter.... I’d like to hear
your concerns.... You must wonder if
you’re going to get well?” Ira Byock, MD,
past president of the American Academy
of Hospice and Palliative Medicine, has
written a practical and compassionate
guide to Dying Well: Peace and Possibilities
at the End of Life.11 The appendix contains
many examples of questions that family
members or patients may want to ask
and insightful responses through which
the professional can open up a helpful
conversation.
What do we need during grief?
Without a doubt, patient, family, and
professionals share some of the same
needs when faced with the grief process.
As healthcare professionals, we need
time alone and time with others to feel
and understand our losses. We need rest,
relaxation, nourishment, and diversion to
be replenished from the exhaustion of
grief. We need a sense of security, trust,
and hope in the future, gained by expe-riences
of being cared for. We need that
which will give impetus and direction
to life when it seems to be without
meaning. We need lightheartedness,
simple pleasures, and humor, which pro-vide
balance and relief from stress. (Met-calf
and Felible provide a helpful
resource.12)
Finally, we can benefit from access to
the transcendent, or spiritual, realm of
life. As Byock11 observed:
It is a paradox of dying that a person
can seem to grow strikingly in the
realms of spirit and soul as [their]
physical self dramatically shrinks....
The contemplative place of prayer or
meditation can provide a place of
safety and distance—not from, but
within, the experience.... This tender
vulnerability [of spiritual composure
and openness] seems a prerequisite
for the deepest tasks of inner devel-opment.
References
1. North Central Florida Hospice, Inc, 1996-2000.
Available at: http://hospicecares.org/hands/norm-grief.
html.
2. The Harvard Mental Health Letter. Nov 1999; pp
4-6.
3. Kubler-Ross E. On Death and Dying. New York,
NY: Macmillan; 1969.
4. Bowlby J. Attachment and Loss: Volume III: Loss,
Sadness and Depression. New York, NY: Basic
Books; 1980.
5. Parkes CM. Bereavement: Studies of Grief in
Adult Life. 3rd ed. Madison, Conn: International
Universities Press; 1998.
6. Worden JW. Grief Counseling and Grief Therapy:
A Handbook for the Mental Health Practitioner.
New York, NY: Springer Publishing Co; 1982.
7. Wolfelt AD. Companioning Philosophy. Fort
Collins, Colo: Center for Loss Educational Seminars
for Bereavement Caregivers; 1999.
8. Wolfelt AD. Understanding Grief: Helping Your-self
Heal. Fort Collins, Colo: Accelerated Develop-ment;
1992.
9. McGoldrick M, Pierce JK, Giordano J, eds. Eth-nicity
and Family Therapy. New York, NY: Guilford
Publications, Inc; 1982.
10. Shear MK, Frank E, Foa E, Cherry C, Reynolds
CF III, Vander Bilt J, et al. Traumatic grief treat-ment:
A pilot study. Am J Psychiat. 2001;158:1506-
1508 .
11. Byock I. Dying Well: Peace and Possibilities at
the End of Life. New York, NY: Riverhead Books;
1997.
12. Metcalf CW, Felible R. Lighten Up: Survival
Skills for People Under Pressure. Cambridge, Mass:
Perseus Books; 1992.
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