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TERMINAL CARE: TREATING THE WHOLE PERSON
Buchholz, WM. Terminal Care, Part 2: Treating the
Whole Person.
J Am Acad Phys Assist . 6: 203-9, 1993.
ABSTRACT
TERMINAL CARE: TREATING THE WHOLE PERSON, William
M. Buchholz, MD
Terminal Care is not a subspecialty but the logical extension
of caring for the whole person throughout a chronic mortal illness.
Quality of life rather than length of life becomes the goal. The
whole person includes a physical body, emotional and spiritual concerns,
and complex relationships as part of a family and community. Consider
the crisis of a terminal disease from the perspective of therapeutic
positivism. With the dangers lie opportunities. As symptoms develop
they should be treated with skill and creativity. As physical function
declines, more outside resources such as HOSPICE are required. The
patient's loss of control and loss of identity requires the reestablishment
of a sense of security. The family must simultaneously bond with
and let go of the patient and still keep their own lives going.
There is no greater opportunity for the PA to be a whole person,
developing intellectual skill in symptom control, growing in interpersonal
skills, and experiencing the awe that comes from participating so
intimately in another's life.
WHO DIES?
"Who dies?" asks Stephen Levine in his book of the same name1.
It is as easy or difficult to ask, "Who lives?" The answer to "Who
are you?" is complex. People have bodies and identify with this
highly visible part. As cognitive creatures people have thoughts
and beliefs which constitute an ego they identify as "the real me."
They experience emotions and when in the grip of a powerful emotion
like anger or fear they may become that feeling and identify with
that as in "I am angry."
People have role-identities as mothers, lawyers, doctors, brothers,
etc. When asked who they are, most commonly people reply, "I'm a
PA." "I'm a doctor." "I'm a mother." Only when pressed will they
go on with their other identities. There are the myriad relationships
and roles of family, business, friends, classmates and so forth.
These relationships constitute the other realms that define us in
our society.
Regardless of religious belief, most people have some sense of
themselves as spiritual beings. This may be a highly organized belief
as is found in many religions. It can be less structured and exist
as a faith that somehow the universe is benign. For some it is a
moment of awe at a sunset or at the birth of a child. Like birthing,
dying is a transition in state and status. When a person becomes
a patient and that patient becomes terminal all of these identities
become fragile, subject to destruction and change as the person
grows sicker and dies.
Acute problems and chronic non-malignant diseases are different
from terminal illnesses. With the former it is sometimes possible
to "get away with" treating the disease process alone, trusting
that the patient will handle the rest of the problems himself. In
terminal care the family-and-patient are the unit of care. It is
impossible to ignore the emotional, spiritual, and social issues
that are an inherent part of the dying process. The Physician Assistant
(PA), or any other professional caregiver, must be able to provide
both technical medical care and recognize and treat (or refer) the
companion problems of mortality.
EXERCISE
To get a more vivid experience of what is involved try the following
exercise. List the 10 most important things, people, relationships,
events, etc. in your life on index cards. Rank them from 1 to 10
in importance to you. Put them face down in order on the table in
front of you. One at a time take the 5 "least important" cards,
look at them, and slowly tear them in half. Shuffle the rest and
let someone draw them one at a time, show them to you, and tear
them in half until only one card remains. (This is an emotionally
powerful exercise and should be done with someone you trust and
can talk with openly.)
WHAT IS TERMINAL?
All definitions of terminal refer to the end of the body and change
in status. Webster's dictionary refers to it as a boundary at the
end of something, a concluding, closing or final period.2 Patients
use the word terminal to mean either near death or having a disease
that cannot be cured. Some patients may consider themselves terminal
because, out of fear or depression, they cannot imagine any outcome
but death. From the physician's perspective, terminal may refer
to the point where efforts to prolong life seem unwarranted. This
decision may be colored by his inability to reverse the disease
with his techniques and be quite subjective. It may not mean that
life cannot be prolonged by other skills and other physicians.
Dr. Ernle' Young, a bioethicist at Stanford University, describes
terminal as "that point X in a person's life that there is a conscious
understanding that the person is dying. That point may be noted
by the patient, the family, or the physician." (personal communication)
Sometimes people just "know" that they are dying, and may be able
to predict the moment of death. There may be conflict, however,
when patient, family and physician have different perspectives on
when the patient is "terminal." In reality "terminal" is a process
that occurs over a time measured in days, weeks or months and awareness
may be delayed until after the biological events have become obvious.
Medicare has defined "life expectancy of 6 months or less" as
terminal for the purpose of Hospice certification.3 There are studies
that show how difficult it is to predict when people will die4 and
recently Medicare has revised its requirements to recognize that
uncertainty.
For practical purposes the following definition of terminal is
offered. The patient has a chronic disease that is progressive in
spite of efforts to prolonging life. Unchecked, the disease process
will kill the patient. The patient and family are aware at either
conscious or subconscious level of the likelihood of death. Patients
have at least some symptoms and some decrease in functional capacity.
ASSUMPTION
For many medical practitioners there is a sense of defeat if the
efforts to cure or prolong life fail. This results in therapeutic
nihilism and a sense of "there is nothing we can do anymore" when
it becomes clear that the patient is terminal. To often the patients
are told, "nothing can be done," in the mistaken assumption that
the physician has considered all the options. For this paper I am
making the assumption of therapeutic positivism: there is always
something constructive that can be done. The Chinese word for "crisis"
is wei dje and is comprised of two ideograms, "danger" and "opportunity."
Before becoming terminal, the patient has faced many crises. In
this final crisis are both the very real dangers of death and suffering
and the opportunities for completing a life journey in a way that
is satisfying and meaningful. In considering the events that the
patient, the family and the PA must face one can consider both the
problems to be overcome and some of the opportunities present. I
encourage the reader to examine these problems and find the opportunities
inherent in them for himself.
(insert Table 1 Tasks of the Patient)
TASKS OF THE PATIENT
Patients with terminal illness have an enormous job. They must
deal with increasing physical symptoms and decreasing physical function;
the psychological stresses of loss of control, loss of hope, fear,
anger, depression and grief; and social disruption as family and
economic roles change. Throughout this patients face the often conflicting
expectations of their families and the medical system. No wonder
nobody volunteers for this job!
Physical Tasks of the Patient
To a greater or lesser degree physical symptoms can be controlled.5
Depending upon the type of cancer and the site of metastases, from
65 to 85 % of patients will have significant pain.6 Pain can be
controlled in up to 91% of cases.7 Unrelieved, chronic pain results
in depression, fatigue, insomnia, anorexia and decreased physical
functioning. These same symptoms may result from the disease itself.
Only by successfully treating the pain can these two etiologies
be separated. Patients often fear pain and can be reassured ahead
of time that their pain can and will be effectively treated. Nausea
and dyspnea can likewise be ameliorated if not eliminated. Decubiti
and wound infections can often be prevented. Anorexia, weakness
and loss of energy are harder to treat.
Side effects of treatment arise and must be addressed. Radiation
proctitis may need cortisone enemas. Opioid induced constipation
can be prevented or effectively treated. Some treatments may be
avoided because of their potential side effects. Patients often
refuse palliative chemotherapy or surgery because they do not want
anything else to disturb their sense of control, preferring to forego
potential benefits to avoid any new symptoms from the treatment.
The loss of physical function and independence that comes from
progressive weakness is sometimes more distressing than any physical
pain. The Karnofsky index is a commonly used objective rating system
that gives a percent score to different levels of activity. (See
table 2) On a personal level, a score of 60% means that simple activities
like getting in the car and driving to the store become difficult
if not impossible. At 50% bathing, shampooing hair, dressing or
cooking may leave patients so tired or breathless that they must
rest ten minutes after each task. The motions required to put on
stockings or lace up shoes may be physically impossible or too painful
to do. If help is not available at that time patients may not get
dressed and hence, be unable to get out. Patients who take pride
in their appearance may be unwilling to be seen publicly because
they are ashamed of how they look. The physical weakness is emotionally
draining so that neither flesh nor spirit is willing and functional
level drops further. It is just as important to ask about and address the problems
of physical functioning as to treat physical symptoms. Find out
what patients actually do and how long it takes them. Specific questions
like "When was the last time you went out for dinner?" or "How much
time do you spend outside the house?" may be required to get useful
information. Vague answers like, "I'm doing ok" may reflect a much
lower functional state than implied. Invite family to be present
during examinations to corroborate and expand upon patient responses.
This will often elicit their help in solving some of the problems.
(Insert Table 2 Karnofsky Performance Scale)
Psychological tasks of the patient
As devastating as the physical symptoms and deterioration are,
the psychological tasks are even greater. Furthermore these issues
must be addressed at a time when patients are physically weakened
and their usual support systems are already taxed. The most prominent
issues are those of hope, control, and loss.
HOPE
Hope has three components: The individual hoping, the projection
into the future (expectation) and the object, event or state desired.8
There are both cognitive and emotional components to hope, both
a belief and a desire. Hope is the creation of a desired future
reality and the projection of oneself into that future. Hope acts
as a coping mechanism, a filter to diminish the impact of events
and an energy that can overcome resistance or inspire activity.
If Hope were a medicine that could be prescribed, the Physician
Desk Reference entry describing its mechanism of action would read:
"Depression is characterized by the inability to imagine anything
different from the present. HOPE, because of the component of Expectation,
relieves the inability to project into the future. HOPE allows such
individuals to create a possible future, thereby relieving the onus
of living in the present. The anticipation of pleasure relieves
pessimism. Anxiety, characterized by a sense of loss of control,
is alleviated by predicting a desirable future event, thereby providing
an anchor for the individual in the midst of free-floating anxiety.
The sense of aloneness is relieved by anticipating allies or help.
Fear, which consists of projecting into the future an undesirable
event (helplessness, pain, etc.) is redirected by the expectancy
of a positive rather than negative outcome. Motivation to accomplish
goals and compliance with medical treatment are increased by a sense
that the goal is attainable."8
What happens when patients are told that "there is no more hope"
and they are terminal? The future ceases to exist. Patients lose
the will to live, often stop eating, withdraw and then die. At the
minimum their fundamental defenses against depression and anxiety
are disabled. There is no motivation to continue treatment or to
be engaged in any future oriented task. Sometimes all the information
in rejected and a state of denial or "false HOPE" arises.
The definition of false hope depends upon the perspective of the
person. From the patient's point of view, no hope is untrue and
he may ask, "How can it be false when I truly want it?" From the
perspective of the PA or physician it is an "unrealistic" view that
a low probability outcome is likely. Medical personnel are particularly
careful to avoid giving false hope and may inadvertently give "false
despair" instead.8
A practical definition of "false hope" is "the creation of a reality
that is inhabitable only by the patient." As long as there is no
harm to the patient or family then the unrealistic but hopeful statements
can go unchallenged. If, however, the actions based upon such beliefs
would be harmful (e.g., an unrefundable deposit on a cruise) then
the PA can gently point out the consequences of such actions on
the family and on the patient himself.
The conflict between the patient's need to maintain hope and the
caregiver's need to be honest generally can be resolved if the emotional
component and future projection are preserved and the object of
hope (goal) is redefined. When asked, "Is there any hope?" it is
appropriate to support the patient's ability to look into the future
with some sense of optimism. If cure is not possible, then comfort
can be promised. If one year is unlikely, then one month may be
guaranteed. If walking unaided is too difficult then independence
using a wheelchair and limited walking can be offered. It is a process
of looking into the glass and finding what is still there.
CONTROL
Cancer, like AIDS or a progressive neurological disorder is a
disease of control. On a cellular level the neoplastic cells are
out of control. They no longer respond to environmental signals
that limit their growth. On a personal level, patients feel out
of control. Their bodies are unpredictable. Their schedules are
disrupted by office visits or symptoms. The feeling of being out
of control filters their experiences and often determines their
responses.
As a rule of thumb consider patients' requests and conversation
as coming from people who feel out of control. When possible, enable
patients to resume as much control as they can in their lives. Symptoms
that disrupt their function should be treated. Arbitrary treatment
schedules can be changed. The environment can be modified. Cordless
telephones, intercoms, remote controls for equipment all make it
easy to extend ones presence beyond limited physical boundaries.
If nothing else, the feeling of being out of control can be acknowledged.
Once shared, it becomes less terrifying.
When examined very closely most of our beliefs about control are
illusions. Ultimately, particularly in life-death situations, we
have very little control. When we realize that our illusion of control
is just that, an illusion, then there can be the beginnings of trust.
Most people put considerable effort into controlling their environment
and the events in their lives. Some become very skilled at this
under "normal" circumstances. When confronted with a terminal illness
the circumstances are different and the previously developed skills
no longer work. The executive accustomed to giving orders finds
that she can no longer instruct her body to carry out her commands.
Even her demands of the medical system cannot be satisfied. The
metaphysically oriented writer, used to invoking his "spiritual
guides" for life decisions begins to lose faith when they seem to
abandon him. His imagery, prayers, herbs and healers appear to be
powerless to stay the advance of his cancer and he becomes weaker.
The engineer whose faith in science and medicine as secular deities
questions the foundations of his world as they, too, seem unable
to help.
When feeling out of control patients revert to their most basic
and often primitive coping mechanisms. Since the basic problem is
lack of trust, it is difficult for them to be flexible enough to
try something new. Often it is a matter of waiting for the right
time to change, when it becomes clear that their present method
of controlling is not working and they don't know what to do next.
Under these circumstances, when the patient "knows that he doesn't
know," there can be an opening for something new and creative.
In this situation the nature of control can shift, just as the
focus of hope can shift. Instead of the individual exercising control
himself or through his immediate environment, control ceases to
be important and they can strive instead for a sense of peace. It
is like being on a bus speeding down a narrow mountain road, being
unable to take control of the wheel. At some point there develops
a trust that Someone is in charge and driving the bus or at least
the faith that no matter what happens one will cope. Both Judeo-Christian
and Eastern traditions emphasize that spiritual development requires
letting go of control. It can range from an apocalyptic vision of
"God as Ruler of the Universe" to a simple "ah ha, so that's how
it is." Regardless of the intellectual form, letting go of control
brings with it a sense of peace and relief that the struggle is
unnecessary.
A sense of humor is likewise important. This is true for both
the PA and patient. A moment of lightness when trapped in a heavy
struggle can often give just enough perspective to show a way out
of the battle. It is not a time for jokes or gallows humor but rather
a pause to look for the ridiculousness of the situation. When faced
with a demanding patient caregivers may feel frustrated. If viewed
with some chagrin as a battle for control, a chuckle can replace
the growl with the realization that there are no winners in such
a battle.
LOSS
Terminal patients are faced with losing everything. They are losing
their sense of immortality as they see their bodies deteriorate.
They lose their social identity as they can no longer work. They
lose their independence as they can no longer function. As illustrated
in the brief exercise in the beginning of this paper, this leads
to a profound emptiness all the way to one's core.
Shock, Bargaining, Anger, Depression, Acceptance--the stages of
loss described by Kuber-Ross--are neither sequential stops on a
bus line nor a work plan to complete.9 These are common human responses
to any kind of loss and are part of the grieving process. Each part
of the person that is lost elicits these responses and they may
not be synchronized. The patient may feel angry about one thing,
depressed about another and shocked by a third. For some losses
there may be no resolution or acceptance in that person's lifetime.
This lack of completion can be distressing for caregivers, especially
when it does not meet with their needs or expectations. When confronted
with patients experiencing loss, caregivers may either try to "fix
it," accelerate the adjustment to it, or feel impotent and withdraw.
Under some circumstances any of these responses may be appropriate.
In other situations the only correct response is a compassionate
ear and a willingness to share their grief.
If it is possible to prevent deterioration and maintain function
then corrective measures should be applied. The loss of mobility
from a pathological hip fracture can be treated with hip pinning
and radiotherapy. It is more difficult to accelerate another person's
emotional adjustment. Sometimes reframing the loss offers a fresh
perspective. It can be helpful to point out that letting go of what
is no longer useful can provide an opportunity for something new
to take its place.
When confronted with another human being's suffering it is easy
to be overwhelmed by its enormity. A natural defense mechanism is
to withdraw and shut off emotionally from that other person. This
can be necessary when the caregiver is drained and has no resources
left. Withdrawal is not, however, the only answer to being unable
to change another's grief. The hard part of loss is feeling alone.
What the PA can do, regardless of anything else, is agree to be
there and not abandon the patient when they just need someone to
share with.
Social tasks of the patient
If a family is disrupted when mother has the flu and can no longer
drive carpool and fix dinner what kind of chaos develops when she
is dying at home and will never resume her duties? Her sense of
self esteem as a productive member of the family and community is
shattered. There may be a sense of shame that she has "failed."
The problems she handled before her illness accumulate and cause
more stress for her and the family. The income drops at a time when
it is most needed since most in most families today all adults contribute
economically. The support she received from her professional and
social activities is curtailed. Both social roles and activities
change with a terminal illness.
The patient's job is to redefine himself or herself, reestablish
a sense of worth and maintain relationships. For people used to
"doing something" as their identity it can be difficult to shift
to "being something." Yet this is the role that is most open to
them as their physical condition deteriorates. As the center of
attention the patient may find a catalytic power previously undeveloped.
It seems quite natural for the elderly to become "consultants" and
repositories of wisdom rather than physically doing chores. Through
introspection the terminal patient can cultivate an understanding
that the rest of the family may be too busy with their "doing" to
do. It is very common for patients threatened with a mortal illness
to become much more aware of the beauty of life. This wisdom, gained
at considerable cost, may be valuable enough for some patients to
remark, "it is worth it."
Although social relationships may change they do not stop. Concerns
about "what will they think?" may sometimes be replaced by "so what?"
More intimacy may develop. Love can be expressed more freely. Deep
friendships blossom. Unproductive relationships can be left behind.
People used to being "givers" become "receivers." Patients may have
to be guided to redefine their generosity as "creating an opportunity
for others to feel the warmth of giving."
At the same time responsibilities must be delegated and turned
over to others. The attorney who has been accustomed to handling
all the home finances and taxes must relinquish these jobs to other
family members, sometimes in the face of their resistance. His style
may have been to "keep things tidy" and it is difficult for him
to see a more casual approach. It may be necessary to compromise
on certain issues, holding firm on others.
Facilitating these social tasks may not be part of the PA's role
but left unattended can complicate overall management. Involving
social workers, counselors, family and friends, and pointing out
that these are active problems can elicit solutions that will make
terminal care much smoother.
(insert Table 3 Tasks of the Family)
TASKS OF FAMILY
The family's job is just as hard as the patient's, perhaps more
so. The patient is the center of attention and all efforts are directed
toward him. It is easy to ignore the family's "dis-ease." They may
feel it is selfish to call attention to their own needs. The family
may think, "Dad is so sick and dying, our problems aren't as important
as his." The medical system may reinforce this belief by ignoring
family unless they make a fuss, giving oil only to "squeaky wheels."
Depending upon who is the patient, the makeup of the family, and
the nature of family dynamics certain problems arise.
Growing closer to patient and completing unfinished business.
With the realization that "it is just a matter of time" families
often try to crowd into that time what had been left previously
undone. They recognize there is no limit on how much love that can
be shared. Regardless of how good the relationship there is always
the possibility of growing closer, of loving a bit more. There is
yet another chance to heal a wound, to give or receive forgiveness,
to clarify a misunderstanding, to repay a debt. There seems to be
a natural drive for completion and there are regrets if such opportunities
are irrevocably missed.
Such completions cannot be forced and there is a hazard of imposing
one's own agenda upon the patient and family. It may be enough simply
to point out opportunities and make it easy for them to happen.
Dealing with one's own and the patient's emotions.
Just as the patient is experiencing the psychological fluctuations
of the illness, so do family members feel anger, denial, depression
and anxiety. They are experiencing a loss, too. They have their
own feelings as well as those of the patient to deal with. Often
family members may have to put aside their feelings to cope with
those of the patient whose needs seem to have priority. This may
be true for the moment but unless dealt with constructively, the
family's emotional needs will ultimately weaken the system.
It is common that when the diagnosis of cancer is first made either
the patient will say, "don't tell my family," or the family say,
"don't tell the patient." Each tries to protect the other. When
patients become terminal this same conspiracy resurfaces in efforts
to protect the other from the news. In neither situation (at least
in Western cultures) can the sham be maintained. Eventually, if
only covertly, everybody finds out and the lack of acknowledgment
only hinders resolution. In Asian cultures and to some extent in
Mediterranean cultures it is standard practice not to share this
information. Because the culture supports this practice it may work
there. Because of the the widespread value of informed consent it
is more difficult to conceal such information in the United States.
It is my practice to encourage dealing with emotions openly in
proportion to the coping skills of the patient and family. Some
families may not want to share their feelings with each other, much
less with strangers. Be sensitive to the emotional state of the
family as well as of the patient and offer help without insisting.
Conflict between family and patient.
The needs and adjustment of the family and patient may not be
coordinated. Arenas of conflict and disputes about control that
existed before the patient became ill still exist and can be magnified
by the disease. Families may still want/need the patient to recover
even though the patient may know that is not possible. Food and
eating can become a battleground as the patient grows more anorectic
and loses weight. Unfinished meals can be perceived as a rejection
of love. Patients can control the family by choosing when and what
they will eat. Families may want more treatment and patients submit
even though they do not truly wish it.
The PA can become a "fair witness" under these circumstances rather
than a judge deciding what is right. It is legitimate to point out
both that advanced cancer often makes it difficult for patients
to eat and that food is necessary to maintain enough strength to
interact with the children.
Gathering support for oneself when feeling unworthy.
Too many times "helping the helper" seems legitimate only when
the helper is near collapse. Because of the visible and dramatic
needs of the patient it seems harder to justify getting specific
help for the spouse or children unless there is some obvious physical
problem. There may be the expectation that since the patient is
such a saint or hero that the family should do likewise. Invisible
needs for emotional support and help with unfamiliar tasks (e.g.,
cooking, managing insurance billing, fixing a leaky sink, etc.)
are just as important as learning to operate an oxygen tank or administer
complicated medication schedules.
Although some families do manage to cope without outside help,
having additional resources available makes the system much more
flexible. Having the number of a Hospice nurse by the telephone
acts like a panic button and may let the family cope better even
without calling for help. It is useful to encourage but not insist
that families contact the local Hospice at least to see if their
services might be useful.
Disruption of family routine and roles and taking on new responsibilities
Having a sick person at home or in the hospital disrupts family
routine. Whatever the patient did before and cannot do now must
be done by someone else. This extends from bathing and changing
someone who is bedbound and incontinent to doing the dishes and
taking out the trash. Ambivalence is likely. The person(s) stuck
with the new job may feel resentful at the interruption of their
lives even while being grateful that they can serve a loved one
in need. In any event, the family's life is different because of
the patient's illness. They may respond to this as a problem or
as a challenge. As the PA gains experience in terminal care, he
or she can help by sharing the solutions that other families have
found to be effective. Anticipatory grief: letting go of dreams and the unrealized future.
The greatest pain is letting go of dreams. The years of planning
for retirement and traveling in an RV visiting the children are
shattered by the realization that one's spouse is dying. An anticipated
reality is snatched away and nothing is left in its place. In silence
the question arises, "What will I do when they're gone?" In order
to protect oneself some distance must be created and there is a
gradual withdrawal from a future with the patient to imagining one
without them. This process is simultaneously the source of depression
and tears and the seed of a new future.
It seems a paradox that the family must both grow closer to the
patient in the brief time that remains and yet become independent
of them, anticipating their loss. The answer lies in concentrating
on the present, focusing only on what is happening now. This avoids
looking into the darkness of the future and allows a greater intimacy
in the present. Letting go of the future is done in small increments
to limit the pain. The best counsel comes from a Chinese proverb.
"You can't prevent the birds of sorrow from flying over your head.
You don't have to let them make a nest in your hair."
Continuing with life after the patient dies.
Life goes on for the family even while the patient is dying. There
is homework to complete, the garden to weed and meals to cook. These
jobs will continue after the patient has died. The future must be
planned for. Because the future had been so carefully dreamed to
include the person who is now dying it lies open now with little
structure. It is easy for family members to be overwhelmed with
both the jobs to be done now and the future to be created later.
Like the man who ate the elephant, even the biggest jobs are done
one bite at a time. When overly stressed, family should be encouraged
to delay solving problems that do not need solutions right now.
Circumstances may change to eliminate these problems (perhaps bringing
on new ones) and they will grow stronger and more experienced as
a result of solving previous problems.
(insert Table 4 The PA's Task)
The PA's TASK
The PA has a challenging professional and personal job. Perhaps
no where else is there such an opportunity to be of service where
there is great need. The properly trained person who is sensitive
to the opportunities available can make an enormous difference in
the lives of both the patient and the family. In addition to the
customary tasks of a PA in caring for patients there are some special
jobs that are almost unique to terminal care.
Competence
In order to provide competent medical care the PA must be familiar
with the techniques of pain control and recognize the complications
of treatments and the disease process. There must be both an understanding
of the common events that occur in dying patients and an appreciation
for the breadth of variation between individuals and between different
diseases. Competence requires knowing the limits of one's training
and a commitment to expanding one's knowledge base. Because much
of terminal care is empirical, one of the best sources of training
is the experience of other caregivers. Competence is gained by close
and conscious observation of patients and families as they go through
the dying process.
Carefulness
Just as critical care requires careful monitoring of physiologic
measurements so does terminal care require careful clinical assessments.
Patients change quickly and in order to take advantage of opportunities
the PA must maintain a high level of awareness. It is important
to follow up on intuition or hunches for the unconscious mind is
often a keen observer. Often I have been spared the mistake of complacency
when I followed my intuition and checked on the patient before a
major problem developed.
Compassion
There is a difference between compassion and sympathy. Sympathy
is a feeling for the patient, often a feeling of pity. This maintains
a distance between individuals. Compassion is feeling with the patient
and serves to bring the two together. It makes both more human.
There is no injunction to "fix" the patient, often they simply wish
to be seen and heard for what they are. Part of compassion is to
be a witness, "And take upon's the mystery of things, As if we were
God's spies."10 When approached with compassion, patients and families
feel safe to be angry or sad, true to whatever they are feeling
at the moment.
Communication
A telephone call initiated by the PA or physician is worth ten
return calls, no matter how promptly they are returned. Communication
is more than a method of exchanging information. It is one of the
most powerful medicines available, probably equal to morphine in
its ability to bring comfort. Sensitive listening and careful observation
of body language can be more effective than CT or MRI scans for
finding out what the patient is experiencing. It is important to
learn how to give negative information tactfully, with a respect
for the impact of the news. When asked directly, the truth must
be told. Not everyone, however, wants all of the truth in one overwhelming
dose. Just as radiation therapy has to be delivered in fractions,
so must information be given in portions that can be assimilated
and used constructively. Even though the caregiver can see the entire
picture and can anticipate what will be needed later doesn't mean
that the patient can deal with it at this moment. Give them time
to digest what they need now.
There are frequent occasions when silences develop and a sense
of awkwardness appears. Before responding to break the silence,
ask yourself, "What would a Wise Man do?" When I have done that
the reply is usually, "be silent, you don't have to do anything."
The nonverbal communication of a touch, a hug, or moving the box
of tissues closer is often quite enough.
Catalyst
A catalyst is an agent that allows or speeds a reaction without
being changed in the process.2 The PA can act as a catalyst when
there is conflict between the patient and family by clarifying issues
and facilitating discussion. This facilitation must be done without
judgment of good and bad, but only a view of what will work or not
work to further the expressed goals. Similarly the PA acts as a
guide in making important decisions, not imposing values but outlining
the best strategy to achieve the stated goal.
Rather than trying to force issues or do too much the best policy
seems to be to "make it easy for miracles to happen." Alan Watts
said of Zen, that with study "one might become the kind of person
who, without actually intending it, is the source of marvelous accidents."11
Great practice is required to cultivate such a presence. In the
mean time it takes boldness to act on intuition when you are uncertain
and courage to remain silent when you have nothing to say.
Keep Cool
Harry Truman is credited with saying, "If you can't stand the
heat, get out of the kitchen." As professional caregivers we may
be required to stand close to the heat of patients and families
in the crisis of terminal illness. If done on an occasional basis
there is time to cool down between emotionally draining situations.
If terminal care is a sizable part of one's practice it is imperative
to develop coping mechanisms that dissipate the heat and prevent
burnout. Regular de-stressing is needed, either with time off or
a regular practice of meditation, exercise, etc. An image that has
helped me is to picture myself as a clear piece of glass. My job
is to allow light from the source to pass through me unimpeded to
an area of darkness. Occasionally I may bend the light a little
to illuminate an area that seems darker than others. It is not my
job to be the source of light, just to keep myself clean and not
to get in the way. Ram Dass, one of the founders of the Boston AIDS
Hospice, suggested that caregivers acknowledge that the work that
is done in not so much for the patient as work on oneself. When
terminal care becomes a method of one's own enlightenment and growth
in compassion it becomes less of an effort and more of a blessing
Suggested Readings
There are many excellent books available on Hospice and terminal
care. The following is not intended as an exhaustive list but rather
a few of the ones I have found useful. The ones by Stephen Levine
have meditation scripts that can be read to patients by family members
and address issues of pain, fear, and loss of control.
Dass R, Gorman P: How can I help? New York, Knopf, 1985.
Duda, D: A guide to dying at home. Sante Fe, John Muir Publications,
1982.
Levine S: Healing into life and death. Garden City NY, Anchor
Press, 1987.
Levine S: Meetings at the edge. Garden City NY, Anchor Press,
1984.
Young V: Working with the dying and grieving. Davis CA, International
Dialogue Press, 1984.
BIBLIOGRAPHY
1 Levine S: Who Dies? Garden City, NY, Anchor Books, 1982.
2 Webster's Unabridged Dictionary, New York, Publishers International
Press, 1979.
3 Brody H: The physician's responsibility under the new Medicare
reimbursement for Hospice care. N Engl J Med 1984; 310:920-22.
4 Forster LE, Lynn J: Predicting life span for applicants to inpatient
Hospice. Arch Intern Med 1988; 148:2540-43.
5 Buchholz W: Symptom control and the psychology of terminal care:
JAAPA 1991
6 Levy MH: Pain management in advanced cancer. Seminars in Oncology
1985; 12:394-410.
7 Viljayaram S, Ramamani PV, Chandrashekar NS, et al.: Continuing
care of cancer pain relief with oral morphine. Cancer 1990; 66:1590-95.
8 Buchholz W: HOPE (generic). JAMA 1990; 263:2357-8.
9 Kubler-Ross E: Death, the final stage of growth. New Jersey,
Prentice Hall, 1975.
10 Shakespeare W: King Lear. Act V, Sc. 2, Line 17
11 Watts AW: The Way of Zen.Vintage Books, NY, 1957
Table 1
TASKS OF THE PATIENT
Physical Tasks
Increasing physical symptoms
Side effects of therapy
Decreasing physical function
Psychological Tasks
Anger, anxiety, depression
Loss of Hope
Loss of Control
Grieving
Social Tasks
Changing roles
Changing relationships
TABLE 2
Karnofsky Performance Scale
100% Normal
90% Able to carry on normal activity
80% Normal activities with effort, some signs or symptoms of disease
70% Cares for self, unable to carry on normal activity or do active
work
60% Requires occasional assistance but is able to care for most
of needs
50% Requires considerable assistance and frequent medical care
40% Disabled, requires special medical care and assistance
30% Severely disabled, hospitalization indicated although death
not immanent
20% Very sick, hospitalization necessary, active supportive RX
needed
10% Moribund
0% Dead
Table 3
Tasks of the Family
Growing closer and completing unfinished business
Dealing with one's own and the patient's emotions
Conflict between family and patient
Gathering support for oneself when feeling unworthy
Disruption of family routine and roles and taking on new responsibilities
Anticipatory grief: letting go of dreams and the unrealized future
Continuing with life after the patient dies
Table 4
PA's TASK
Competence
Carefulness
Compassion
Communication
Catalyst
Keep Cool
©Buchholz 1997 All rights Reserved
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