ONCOLOGY 00954543 /98 $8.00 + .

OO

CONSIDERING ADVANCE
DIRECTIVES FOR
ONCOLOGY PATIENTS
David J. Doukas, MD, and Michael A. Doukas, MD

Working with patients who have cancer in the primary care setting has the
potential to present unique difficulties between physicians and patients. Problems
can arise easily when the goals of treatment and care as they are understood by
the primary care physician, the oncologist, and the patient are not the The
expectations of patients may be shrouded by hopes and fears about how they will
respond to the challenge of a newly discovered cancer. The primary care physician
can play an important role in working with the cancer patient and the cancer
specialist to clarify and resolve the value-laden issues related to advance health
care planning. Oncologists should feel free to draw on the resources of the primary
care physician when working with patients. Reviewing therapy options, discuss-
ing advance directives and palliative care, and appropriate referrals for hospice
care are all areas in which the primary care physician can be helpful in the care
of the cancer patient. This assistance can occur in the outpatient or inpatient set-
tings. To highlight the considerations of how such medical teamwork can occur,
the following case study is intended to demonstrate how a less than optimum
clinical scenario can occur.

CASE STUDY

A 76-year-old white man with a history of small cell cancer of the lung pre-
sents with a request for placement, possibly to a hospice unit. His wife could no
longer care for him, and he was dehydrated with poor oral intake. Other medical
illnesses included chronic obstructive pulmonary disease (COPD), peptic ulcer
disease, hypertension, and benign prostatic hypertrophy.
~~~~~ ~ ~

From the Department of Family Medicine, and the Program in Society and Medicine, The
University of Michigan Medical School, Ann Arbor, Michigan CDJD), and the Division
of Hematology and Oncology, Markey Cancer Center, The University of Kentucky,
Lexington, and VA Medical Center, Lexington, Kentucky (MAD)
~~~~ ~

PRIMARY CARE

-
VOLUME 25 * NUMBER 2 TUNE 1998 423
424 DOUKAS & DOUKAS

The patient had been previously treated with four cycles of combination che-
motherapy. He refused further therapy after the fourth cycle because of side effects
and weight loss. He was subsequently treated with radiation therapy for recurrent
growth of the right upper lobe lung mass. One month prior to admission, he
developed a left middle cerebral artery vascular accident that left him with right-
sided residual hemiplegia.
On admission to the hospital, the patient, appearing oriented and lucid, in-
dicated a preference for aggressive medical management including cardiopul-
monary resuscitation (CPR). The patient did not have an advance directive (i.e.,
neither a living will nor a durable power of attorney) at the time. Consultation
with the oncology service resulted in the patient reaffirming his decision of no
further intravenous chemotherapy, but a desire to receive modest oral chemo-
therapy. Several days after hospitalization, head magnetic resonance (MR) imag-
ing showed multiple lesions indicative of metastases, and radiation therapy was
initiated. The patient subsequently developed a new paresis on the left side of his
body with cortical blindness. A CT scan demonstrated the occurrence of a hem-
orrhagic event. Because of the patient’s step-wise diminishment in neurologic
status, the patient‘s wife was consulted. She made the decision that intubation
would not be pursued if a catastrophic event transpired, but otherwise he should
receive cardiac resuscitation. Two days later the patient was found apneic without
pulse and cardiac arrest procedures were followed, with the patient ventilated by
ambubag. After 13 minutes of unsuccessful resuscitation efforts, CPR was discon-
tinued and he was pronounced dead.

Case Considerations
Several questions arise when considering this case:
1. Did the patient understand his diagnosis?
2. Was the patient in irrational denial?
3. Did the patient understand that he would soon die and that the chances
of surviving CPR with metastatic cancer was nil?
4. What was the extent of the discussion on advance directives with the
patient?
The patient apparently desired treatments to combat his cancer that were
clearly of palliative potential only. The patient’s preference to attempt CPR, how-
ever, reveals that he desired to prolong his life despite known terminal cancer.
After discovery of the metastatic brain lesions, it was evident to the health care
team that the patient’s life was nearing an end. Unfortunately, this reappraisal of
the patient’s prognosis was either not presented effectively to the patient, or the
patient was in a state of deep denial, as his requests led to what most would define
clearly as futile care. A better appreciation by the patient of his advanced terminal
status might have been useful in refining his view toward his medical treatment.
The patient subsequently lapsed into a state where he was unable to formulate
an informed consent. The health care team then went to the patient‘s spouse and
negotiated new parameters for code status. The wife then stated her preference to
attempt CPR but forego intubation. This treatment plan change may or may not
have reflected the patient’s preferences for end-of-life care (especially in light of
his accelerated deterioration). Further, his wife’s understanding of what the prog-
nosis was in this circumstance also couldbe questioned. When patients or family
members make artificial borders between different life-prolonging treatments, the
goals of such treatment may be questionable.
A proactive discussion on the types of treatment that are realistic and ac-
 CONSIDERING ADVANCE DIRECTIVES FOR ONCOLOGY PATIENTS 425

ceptable to both patient and physician would be prudent when treating those
afflicted with cancer prior to the onset of i n ~ a p a c i t y . ~ ,The
' ~ , ' ~above case lends
itself well to this discussion. The uses of technology are manifold in the treatment
of cancer. Unfortunately, physicians seldom articulate which therapies are highly
unlikely to benefit the patient.'" Therefore, an ongoing disclosure of the patient's
diagnosis and prognosis are fundamental to the patient's understanding of pos-
sible future treatment choices.' Because such efforts can be labor intensive, the
question how remains as to the medical system can make this task less laborious.

COMMUNICATION IN PRIMARY CARE-

ONCOLOGY COLLABORATION

The typical scenario for how cancer is discovered in patients often begins
with a primary care encounter. The patient has come to his or her physician with
a symptom, or presents with a new sign on a physical examination or screening
test. At this point, the primary care physician may enlist the consultation of a
specialist for confirmation of a tissue diagnosis or an oncologist to evaluate and
manage the treatment of the patient. Ideally, discussions on advance directives
have already taken place in the primary care setting before serious illness occu-
This interchange is relevant as a fundamental part of preventive health
care in the primary care setting. Therefore, it is prudent and extremely helpful to
discuss health care planning for future events of incapacity before a cancer diag-
nosis is made. This discussion is even more relevant after a cancer diagnosis.
After a cancer diagnosis, the discussion on advance directives could take place
in either the primary care physician's office or the oncologist's office. The authors
believe it is more appropriate to initiate such discussions with the former rather
than the latter.
How can the primary care physician assist the oncologist in counseling pa-
tients on advance directives? Below is a suggested framework and rationale for
primary care physicians on how to work with their patients in discussing advance
directives and how they can assist oncologists. By facilitating conversations on the
use of advance directives in the primary care setting, it allows both the patient
and oncologist to concentrate on issues of treatment of discovered cancer. It should
be pointed out that in the absence of such conversations, the oncologist has the
daunting task of attempting to articulate the informed consent for treatment op-
tions as well as the task of discussing options of discontinuing or withholding life
sustaining treatment in the future. If the oncologist would do both processes with
a new patient, this would be viewed potentially as sending a mixed message. A
potential pathway of fostering communications in this circumstance is illustrated
in Figure 1.

DISCUSSION OF ADVANCE DIRECTIVES

Advance directives (the living will and durable power of attorney) should
first be discussed by primary care physicians in the outpatient setting. Written
information about advance directives should be given to patients on a periodic
(e.g., yearly) basis if one has not been executed.
The accumulated trust between the patient and primary care physician allows
for a more detailed and frank exchange on issues of end-of-life care. Primary care
physicians are arguably the most logical persons to advance the use of living wills
and durable powers of attorney because they are the health practitioners who best
know the health values, beliefs, and attitudes of their patients. To thrust this con-
426 DOUKAS & DOUKAS

BEFORE HOSPITALIZATIONIS NEEDED

Primary care physician discusses advance directives in the primary care setting.

1
Completed advance directives are placed in the patient's chart.

J
Advance directives are forwarded to oncologists.

1
IF HOSPITALIZATIONIS NEEDED

The primary care physician discusses advance directives with patient.

OR

The oncologist discusses advance directives with patient.

1
The oncologist forwards advance directive preferences to

the primary care physician.

1
The primary care physician periodically reviews

advance directive preferences with the patient.

J
Reassurances of comfort during palliative care are made.

Figure 1. A communication strategy for primary care physicians and oncologists on advance
directives.

versation on a specialist who has not yet had the opportunity to generate bonds
of trust can make this interchange difficult. This discussion can be fit into the
health maintenance examination visit or can be completed over several primary
care visits. Also, this conversation can be facilitated prior to the discovery of se-
rious illness when the patient is at a lower level of physical and mental stress. The
options of advance directives include do not resuscitate (DNR) orders, the living
will, the durable power of attorney for health care, and the Values History (Table
1).3,6Of those who receive information about these advance directives, most pa-
tients will be willing to discuss them, some will be willing to sign (or execute)
them, and others will defer the decision until another time.9,13
 CONSIDERING ADVANCE DIRECTIVES FOR ONCOLOGY PATIENTS 427

Table 1. ADVANCE DIRECTIVES

What is an advance directive?
An advance directive is an oral or written declaration that identifies future preferences re-
garding consent or refusal to medical therapies for circumstances when patients may not be
able to speak for themselves.
What is a living will?
A living will is a written advance directive that indicates which therapies the patient would
accept or reject in the future if they were terminally ill, in an irreversiblecoma, or in a persistent
vegetative state. The living will, in essence, speaks for the patient when he or she cannot any
longer.
What is a durable power of attorney for health care?
A durable power of attorney for health care is a written advance directive that transfers
decision-making authority about health care to another person in future circumstances of
incapacity.This person, termed the agent, uses the patient‘s values and preferences to make
future health care decisions.
What is the Values History?
The Values History (Doukas and McCullough6)is intended to supplement a living will or du-
rable power of attorney for health care with relevant medical values and specific preferences
regarding end-of-lifecare. The Values History stimulates discussion and clarifies preferences
of future medical care, while helping families and physicians better understand when advance
directives should be imolemented.

The task of discussing advance directives remains with the primary care phy-
sician, especially when he or she establishes the diagnosis, and prior to the on-
cologist entering the patient’s health care team. The authors believe that there is
an obligation prior to that referral to have an advance directive discussion. When
patients have a diagnosis made, they are informed of their diagnosis and prog-
nosis and of the options of therapy. In all circumstances, one of these options
should be no therapeutic intervention. This clearly applies, then, to an unfortu-
nately large number of patients with metastatic disease (those for whom no clear
survival advantage can be shown by present treatments). By extension, patients
have a right to be informed of the option of nonintervention for any and all ther-
apies by the execution of an advance directive. The physician who has an estab-
lished relationship with the patient is best able to perform the task of discussing
those values that drive patient preferences for future care.I6Their rapport with
the patient already is established and this physician is best positioned to under-
stand the patient’s values and overall social situation.
Copies of completed advance directives should be placed in the patient’s chart
to assist in future care. Completed advance directives should be reviewed every
6 to 12 months.
Having advance directives in the chart makes documentation easier for the
patient and the health care team, should the patient lose capacity in the future.
Such documentation also informs the patient’s family, thereby avoiding well-in-
tended, but misinformed overly-aggressive treatment requests that are counter to
the patient’s directives. Reviewing the dirgctives periodically facilitates discovery
of changes in values that may occur over time, thereby altering the patient’s pref-
erences on life-sustaining treatment.I6 Periodic discussion with the patient acts as
a recheck to verify the stability of his or her preferences over time as their prog-
nosis changes.
In the event that the patient has to be referred to an oncologist for suspected
cancer, relevant information on the patient‘s advance directive preferences should
428 DOUKAS & DOUKAS

be included. Patient misconceptions of medical treatment that are clearly futile

should be proactively discussed at this time.
When referring a patient, the primary care physician should inform the on-
cologist regarding relevant discussions that have taken place to date regarding
DNR orders, the living will, the durable power of attorney, and the Values History.
Primary care physicians should make this information freely available to the on-
cologist. Proactive discussions on advance health care planning may not have
occurred prior to the patient’s diagnosis of cancer or if the patient is critically ill.
Although some patients may shy away from the issue of advance directives until
they are confronted with an imminent threat to their mortality, most will n0t.I3
Similarly, many primary care physicians may not wish to broach advance direc-
tives until there is some concern that the patient’s risks are rising to a higher level.
It is important for the primary care physician to engage in a values discourse early,
as all cancer therapy should be guided by the patient’s v a l ~ e sA . ~specialist may
be even more inclined to put off a discussion of advance directives until further
into the cancer treatment course, if for no other reason than to first establish a
working relationship. If the patient, though, has deferred these discussions until
later (i.e., when the medical evaluation is complete), future discussions may be
thrust upon the oncologist or deferred back to the primary care physician. The
oncologist should feel free to get the primary care physician back into the con-
versation. This proposed relationship intentionally describes a more optimal re-
ciprocated communication flow (as opposed to a one-way referral).
How should the primary care physician approach the level of risk the patient
wishes to take on in cancer treatment? Aggressive therapy can be quite toxic,
causing patient morbidity and even mortality. For some patients, therapy can be
curative. It is important for the primary care physician to review risks and benefits
of cancer treatment options with the patient prior to an informed choice. The
patient may have inappropriate expectations about treatment and cure that a frank
conversation between the patient and primary care physician may obviate. Also,
when the patient makes a request for medically futile treatment, the primary care
physician can employ methodologies to educate, dissuade, and if necessary, trans-
fer the patient to another provider.8
If the patient requires hospitalization, the oncologist may request the primary
care physician visit the patient to have the above discussion. Regardless of ad-
mitting privilege status, the primary care physician can be a valuable asset to
counseling in the tertiary care setting. He or she can explain the treatment options
that lay before the cancer patient, and can work with the patient to sort through
conflicting value-laden hopes and fears of combatting the disease with the values
and preferences the patient has toward life-sustaining treatment (should they later
be found to be terminally ill). It is far better to have such discussions with a
provider known for a long period of time, as there is an increased likelihood that
enhanced trust in the relationship will foster greater openness in communication.
The patient likely identifies with this physician because of their longstanding re-
lationship, and it is the primary care practitioner who has the higher probability
of understanding the patient’s respective values toward life-prolonging treatment.
The primary care clinician would be the best person to elicit or expand upon prior
discussion of values relevant to futurs health care (e.g., a Values History).‘jIt is
also less likely that the patient will be confused by a mixed message of treatment
versus palliation versus the withholding of treatments if the primary care physi-
cian does this rather than the oncologist.
If the oncologist does not request that the primary care physician visit the
patient, he or she may review any information the patient received on admission
and ask if the patient would like to sign forms that would articulate preferred
treatment in the case of future incapacity.
 CONSIDERING ADVANCE DIRECTIVES FOR ONCOLOGY PATIENTS 429

If a patient is being hospitalized, he or she will have information given to

them during the hospitalization about advance directives (as required by the fed-
eral Patient Self Determination Act or PSDA). There needs to be attention paid to
screening patients at every step of workup and treatment on advance directives.
The need to have frequent discussions on where the patient is in his or her treat-
ment is essential to the patient’s free and informed choice about therapeutic op-
tions. This vigilance is necessary because, although patients have a right to refuse
medical care, they may be reluctant to discuss their own mortality.
The oncologist can work proactively with patients so that they will have ra-
tional expectations of treatment and any subsequent difficulties that may require
the use of life supportive measures. While the primary responsibility falls to the
primary care physician, there is a secondary responsibility for all those who will
be contacting the patient thereafter. The oncologist needs to make sure that the
issue of advance directives has been broached. Although it may be difficult for
the oncologist to sit down with a new patient and ask about preferences concern-
ing life-prolonging treatment, the ultimate consequences could be far worse if no
discussion takes place.
Advance directives are best considered prior to initiating oncology therapy.
Establishing trust is crucial to this advance directive conversation if the patient is
told that he or she has cancer, and then the discussion directly proceeds to advance
directives, it could send a far more negative message than is intended. A proactive
approach to advance directives stresses sensitivity in disclosing a cancer diagnosis,
presenting treatment options, and discussing decisions regarding life-sustaining
treatment. Nevertheless, discussions regarding patient preferences on life-pro-
longing treatment (for future events such as terminal illness and inability to com-
municate) should be part of the informed consent process, either in the oncologist’s
office or primary care physician’s office. The resultant discussion allows the pa-
tient to specify the parameters of treatment and discontinuation of same, and
under what specified circumstances. These candid exchanges help ensure that
patient preferences are implemented through the appropriate use of physician
DNR and other orders during hospitalizations.
Information is a two-way street. On discharge from the hospital, the oncolo-
gist should forward all information regarding current advance directives and re-
suscitation preferences to the primary care physician. Advance directives that
have changed during hospitalization and treatment should be forwarded to the
primary care physician. If values and preferences have been altered by the pa-
tient’s treatment and future prospects, the primary care physician needs to be
apprised of these changes as soon as possible. In this way, the patient, the primary
care physician, and the oncologist can best understand the differing perspectives
of each party and can make decisions regarding the acceptability of the other’s
values and treatment preferences within the context of his or her own integrity.
Should these values and preferences markedly differ (e.g., the level of aggressive-
ness of treatment), one party can then seek out another health care practitioner
who is accepting of these differences. When the patient is seen in follow-up, the
primary care physician should reconfirm or review the issue of advance directives
given the new situation. The changeable nature of diagnosis and treatment makes
this information extremely relevant to future care.
The primary care physician should contipue to review advance directive pref-
erences when the patient is being treated for cancer in the outpatient setting. Sim-
ilarly, the primary care physician may maintain an ongoing review of the clinical
situation and any effect upon patient advance directives. These changes should
be charted for future reference and used in the event of patient incapacity. Also,
if miscommunication about intentions of specific treatment directives arises, the
primary care physician and patient can clarify it. Of particular note is the impor-
430 DOUKAS & DOUKAS

tance of counseling patients on which forms of therapy are highly unlikely to result
in patient benefit and are considered futile.2,RThese discussions are especially
relevant when patients are requesting CPR and the prognosis is very bleak. De-
spite two studies in cancer hospitals that suggest significant opportunities for
survival and subsequent hospital discharge for acute, reversible arrest (rates of
7% to 19%), seven other studies on patients with metastatic cancer demonstrate
0% will survive to di~charge.’~ Prospective counseling can avoid patient and fam-
ily burden and pain when therapies are highly unlikely to be helpful. These dis-
cussions also can point out ethical conflicts on the goals of future treatment that
can be addressed.
Reassurances of care are important in palliative care, especially regarding
pain control and parameters of acute and long term care.
A great deal of what oncologists do is palliative care. Although not curative,
palliation is care that either optimizes physiological functions or minimizes suf-
fering. When treated as an outpatient, the patient is being seen in chronic follow-
up by an oncologist and the primary care physician. These patients need to be
assured that their pain will be treated as they deteriorate. Also, they need assur-
ance that if their functionality becomes markedly worse, that home health and
hospice services will be able to assist them. Often, an oncologist does not need to
be involved in pain management except to guide the primary practitioner. Given
the much greater needs of narcotic use in cancer patients, however, such collabo-
ration may result in more satisfactory pain control.

CONCLUSION

When oncologists see a patient referred to them, they should review and
elaborate what the patient’s medical options are and seek out the patient’s pref-
erences for treatment. Unfortunately, most primary care physicians may not wish
to discuss the cancer treatment options, deferring the discussion for the oncologist.
This leads to a situation in which the patient’s first understanding of their options
comes not from their longstanding physician, but from a specialist they have no
relationship with, a less than optimal circumstance. As discussed above, the pri-
mary care physician can be a valuable asset to the informed consent process in
oncology. The oncologist should feel free to bring the primary care physician into
the conversation of therapeutic options to assist the patient in sorting through
their treatment choices, particularly regarding the use of advance directives in
clarifying the use of life-sustaining treatments.

References

1. Civetta JM: Managing the cancer patient and family. American College of Surgeons
Bulletin 7925, 1994
2. Collins E, Mozdzierz G: Ethical considerations in treating oncology patients in the in-
tensive care unit. Crit Care Nurs Q 18:44, 1996
3. Doukas DJ, Reichel W: Planning for uncertainty: A guide to living wills and other ad-
vance directives for health care. Baltimgre, John Hopkins University Press, 1993, pp 67-87
4. Doukas DJ, Brody H: After the Cruzan case: The primary care physician and the use of
advance directives. J Am Board Fam Pract 2201, 1992
5. Doukas DJ, Brody H: Care at the twilight: Ethics and end-of-life care. Am Fam Physician
52(5):1294, 1995
6. Doukas DJ, McCullough L: The values history: The evaluation of the patient’s values
and advance directives. J Fam Pract 32:145, 1991
 CONSIDERING ADVANCE DIRECTIVES FOR ONCOLOGY PATIENTS 431

7. Doukas DJ, Gorenflo D, Coughlin S The living will: A national survey. Fam Med 23:354,
1991
8. Doukas DJ, McCullough LB: A preventive ethics approach to counseling patients about
clinical futility in the primary care setting. Arch Fam Med 5:589, 1996
9. Ewer MS, Taubert JK: Advance directives in the intensive care unit of a tertiary cancer
center. Cancer 76:1268, 1995
10. Owen C, Tennant C, Levi J, et al: Cancer patients’ attitudes to final events in life: Wish
for death, attitudes to cessation of treatment, suicide and euthanasia. Psychooncology
3:1, 1994
11. Roy DJ: Ethical issues in the treatment of cancer patients. J Palliat Care 5:56, 1989
12. Roy DJ: Ethical issues in the treatment of cancer patients. Bull World Health Organ
67341, 1989
13. Sachs GA: Caring for older cancer patients: Practical decision-making guidelines with a
focus on advance directives. Oncology 6:131,1992
14. Sculier JP: Cardiopulmonary resuscitation in cancer patients: Indications and limits.
Clinical Intensive Care 6:72, 1995
15. Stephens RL: Oncology patients and the living will. Oncol 6:77, 1992
16. Thomasma DC: Ethical and legal issues in the care of the elderly cancer patient. Clin
Geriatr Med 3:541, 1987

Address reprint requests to

David J. Doukas, MD
Department of Family Medicine
The University of Michigan
1018 Fuller Street
Ann Arbor, MI 48109-0708
e-mail: ddoukas@umich.edu