Family's Role in Medical Decision-making from the Point of View of a Physician
in the United States
- SumikoTakanami, Ph.D.
Visiting Scholar at the Center
for Bioethics, University of Minnesota
College of Medical Technology, Hokkaido University, Kitak-ku N-14 W-5, Sapporo
Eubios Journal of Asian and International Bioethics 12 (2002), 216-9.
This research looked at how, under different medical
circumstances from Japan, physicians in the U.S. think about the role of family
in medical decision-making in case of cancer disclosure. Interviews were used
to gain subjective data from physicians about the role of the family in medical
decision making. The questions focused on the participants' views by asking
open-end questions. The research was approved by the Institutional Review Board
of the University of Minnesota. From interviews with seven physicians in the
U.S. the author observed that a good relationship between physician and patient
including the family was established by Informed consent. By giving priority to
the patient's wishes and interests over the family's in informing patients of
cancer diagnosis, physicians have expected family members to be involved in
medical decision making as primary caregivers. By valuing the process of informed consent, physicians have
spent a lot of time in talking with patients and family members in the process
of medical treatment.
Japan Informed consent in the
medical field has recently received widespread attention. However the situation
is different in the case of informing persons of cancer diagnosis. Because cancer has still been accepted as an
incurable disease, courts have decided that informing patients of cancer
diagnosis was up to the physician's discretion, considering sufficiently
various factors, such as the patient's age, sex, personality or beliefs,
relationship with the family, and
so on. Several recent decisions have added
the patient's desire for cancer disclosure to the list of factors to be considered before disclosure (1).
But, in the clinical setting, when a patient is afflicted with a cancer, the
physician in charge usually informs the family of the patient's diagnosis
first, and consults with the family about whether or not the patient should be
told the diagnosis. If the family
does not want the patient to be told, or the family opposes informing the
patient, the physician usually follows the family's wishes.Very few physicians override the
family's objection (2).That way, family members sometimes or
often become like a substitute decision-maker for competent patients (3).
In contrast, in the U.S. the doctrines ofinformed consent and patient's autonomy
have largely protected the rights and interests of the individual patient in recent times (4).On the other hand, in the U.S. it is
also controversial that dominant patient-centered medical ethos has failed to
involve the family members in decision making. For example, Kuczewski suggests
that "Having focused on the rights of the patient for so long, it follows
that ethicists now wish to map the relationship surrounding the individual that
may affect medical decision making" (5). Hardwing advances the acknowledgement
of the interests of family members in medical treatment decisions forces
changes at the level of ethical theory and in the moral practice of medicine, asserting
that the interests of patients and family members are morally to be weighed
equally (6). But, giving priority to the interests of patients, Blustein argues
patients should be encouraged to include the interests of family members in
thinking about medical choices (7).
In these different medical circumstances, how do physicians of two countries,
the U.S. and Japan, think about the role of family in medical decision making
in case of cancer disclosure. This research was firstly performed on physicians in the U.S.
purpose of this study is to learn about the
role of family in medical decision-making through physician's practice
of informing a patient and the family about a diagnosis of cancer in the United States.
were used to gain subjective data from physicians about the role of family in medical decision making. Seven physicians
accepted the invitation to participate in this research. They participated in
an interview with one investigator (the
author). The average interview was 25 minutes. The questions focused on the
participants' views and asking open-ended questions. These interviews were
audio taped. The audiotapes were transcribed by the same investigator in order
to protect the privacy of the subjects.
research was approved by the Institutional Review Board and an informed consent
form was read and signed at the beginning of each physician interview. Prior to
the actual research, one physician (Internal Medicine) was interviewed to
review the interview questionnaire.
The duration of the interviews was
from 21 May to 20 June, 2001.
gender, medical specialty and length of clinical experience of the subjects
were as follows: Male, Internal medicine, 20 years; Male, Pulmonary and
Critical care, 20 years; Female,
Internal medicine,19 years;
Male, Cardiology, 8 years; Male,
Hematology and Oncology, 7 years;Male, Internal medicine, Pulmonary,
ICU, 7 years; Female,
Internal medicine, 3 years.
The questions and findings from each question were as follows.
A. How do you make sure whether or not a patient wants
to be informed of a serious diagnosis, such as incurable cancer?
The answers were divided into the
following two. First, participants
generally started with the assumption that patients wanted to be
informed. The reasons were that it
is an expectation in the United States
that a patient wants to be informed, or that physicians will tell the patient
everything. Four participants added that it was extremely
rare for a patient not to want to know his/her diagnosis, and that
they have never had such a situation.
Secondly, participants have confirmed
how much information a patient needs in the process of making diagnosis through
clinical conversation, performing diagnostics tests and explaining the results.
B. If a patient does not want to know cancer
diagnosis, should the physician inform the family of it? Why, or why not? In this
case, what is the family's role?
All the participants answered that a physician
should inform the family of cancer diagnosis. The reasons were:
nobody knows what has happened to a patient, there is no way for the patient
and family to talk about real things.
wants to know about a patient.
It is very important for the family to know cancer diagnosis in order to talk
about what's going on patients and
deal with issues that they are now involved.
Informing the family makes it
clear to the family that the patient has chosen not to know the diagnosis.
a patient cannot have any treatment
without being informed a physician
has to obtain informed consent from the family.
The roles of family in this case included;
should give informed consent to diagnostic tests or treatments on behalf of the
family should have a good relationship with the patient to spend the precious
time of dying and death.
have to take the
responsibility for taking care of the patient.
Family members should help a patient to know about what's going on and support patient's decision making.
Two physicians answered they
have never had such a patient.
C. If a patient wants to be informed of his/her cancer
diagnosis. 1. to whom do you tell the cancer diagnosis first, a
patient or the family members?
All the participants
replied that they usually tell a patient
first as far as the patient's conditions permit. Some participants added that a
patient first, but whether to inform
the family of the diagnosis depends on the patient's approval, that they try to inform a patient and the family at the same
time, and that a patient first because family has no rights to that private information.
The answers to questions related
with part 1 are summarized as follows.
1) Factors that influenced the decision to tell the patient first...
Participant's own clinical
understanding; Patient's medical condition is a private affairs,
have to be informed because it is patient's own life.
Results of training; When patients are sick, a physician has responsibility
for the relationship with patients, not the family. The legal obligation is to
inform patients, but not the family.
Family dynamics, or patient and family circumstances
that a patient has a lot of questions.
2) From where participants
acquired such principles...
Personal clinical experience and ethics
2. Even if a patient wants to be told and has been informed, should physicians
also tell the family about the diagnosis?
Three participants responded that the family should be
also told about the patient's diagnosis. The other three answered that whether
they tell the diagnosis to the family depended on a patient's approval or permission. Also two of them added that they had a legal
obligation to inform the patient but not the family.
Regarding roles of the family, participants who asserted the necessity of informing the family were expecting the family to play the following roles;
Family members can be a
primary caregiver of the patient and they
should provide both physical care and emotional support.
If people have a terminal
illness, they are so scared. The family or best friend should talk with
patients and support their grievous
Family members help the
patient understand what's going on him/her
and make a medical decision.
answered whether to inform the
diagnosis to family depended on
the patient's permission also admitted
the family's role to play for the patient as follows.
When a patient is going to
require treatment the family is going to have to be involved in terms of care
that patients need to make sure they are comfortable.
Family plays a lot of roles,
such as emotional or psychological support and on behalf of the patient only
the family can do things that a patient has to do to prepare for the end.
3. Are there any kinds of cases in which you would
inform the family first?
an assumption that a patient is adult and competent to make medical decision,
all participants answered there was no situation. But in the case of people who
have psychiatric problems or are severely
depressed the family should be informed first. Obviously if cancer makes the patient
impair the judgment, this is also a different situation.
4. Have you ever experienced a situation in which
family members don't want the patient to be told of the diagnosis?
Three participants answered yes. One of them said as
follows. From time to time, people ask physicians not to inform patients. However, if a patient says that a physician should tell the family
first, discuss the matter with the family.
This is totally different. Then physicians
do as the patient directs and the patients will not be told unless the family
Another answered that he had once every two or three months, and he always approached
in the same way, spending a long time in talking with family
members, and explaining why it was important for patients to know.
The third said that he has seen some situations where families did not want him to tell patients that they had an incurable disease, and that then we should take a look at
not only the behavior, but at what
the cultural belief that underlies the behavior is.
participants replied that they
have experienced one case. At that time they asked the family why did not want the patient to be informed. They talked
with family members how important it was
for the patient to know the diagnosis over
and over again.
participants had no experience.
4. Have you ever overridden the family's will for
participant said he had sometimes overridden it and said that he was usually able to talk with family to change the mind, but he could not override patient's wishes if the patient told him not to tell the family because the patient was
the one he was taking care of and was primarily responsible to, not to the family.
Three physicians have never experienced this. One of
them said that as he always
told to a patient first, that happened a very rare. Another said
that he thought the goal was
just to try to avoid fights and it
was better to discuss cancer disclosure with the family before
diagnostic tests were given.
One participant said that though elderly
people tended to ask a physician
to make a decision for them, this was one of options in medical decision
A is exploring how physicians make sure whether a patient wants to be informed
of a serious diagnosis. It can be said
that starting with the assumption that patients want to be informed almost
physicians get information about how much patients want to know or what they
need to know through talking with patients and/or family members about diagnostic tests and the resultsin the process of making diagnosis.
following answer was impressive,
"Our patients would come to a physician for their diagnosis, that would be the
purposes of their visits". Furthermore this interview made it clear that physicians have taken a lot of time to talk with a patient and/or family
members and have valued the
process of obtaining consent. This was also useful for the author to reconfirm
what informed consent was.
B is a case in which a patient does not want to know his/her diagnosis.
Admitting it was very rare for patients not to want to know the diagnosis almost participants said that they would inform the family of the patient's diagnosis in this case. Some
of reasons were that the family should be informed in order to spend precious
time with the patient who was dying and to take a responsibility for caring the
Legalistic factors have influenced the physician's informing the family of the diagnosis. First, because a physician has legal
obligation to inform a patient of the diagnosis a physician should tell the family about the
fact that a patient has chosen not to know the diagnosis. Secondly,
because a patient cannot have any
treatment without being informed a
physician should tell the family to obtain informed consent to
diagnostic tests or treatments from the
Most participants have understood that even if a patient does
not want to know his/her diagnosis family members should get
information from physicians to help the patient know aboutwhat's going on his/her self and make a
In the case of an incurable
cancer, the time would come when physicians
have to get the patient's consent
to chemotherapy, radiation therapy, pain control or palliative care, and so on. This means that it is extremely difficult for the patient to
be kept from the truth.
C is a case in which a patient wants to know his/her cancer diagnosis, in this
case all the participants usually tell a patient first about it as far as the patient's condition permits, or try to inform the
patient and the family at the same time.
whether a physician should also tell the
family about the diagnosis, three participants said yes, and they said that telling the family depended on a
patient's permission. Two of them mentioned that they have had a legal obligation only to a
In this case, participants
expect the family to play the following roles. First, the family should provide both physical care and emotional support as a primary caregiver of the patient because until a patient dies of cancer he/she would have to struggle with frightening time. Secondly, focusing
on the patient's rights and interests
physicians also want the family to help the patient make a medical decision (8).
question about the experience of being asked not to inform a patient of the
diagnosis by the family, two
physicians whose clinical experiences were
twenty years and one oncologist whose clinical experience was seven years
answered that they have experienced such a situation. It can be said even in
the U.S. that when a patient is diagnosed with an incurable cancer some family do not want patients to know it. In this case, physicians spend a long time in talking with family members to explain why it
is important for patients to know
how to consider the cultural differences among patients.
physician commented as follows. We have a lot of treatment and medicine now. We
can treat most incurable diagnoses
and people go a long time after
they were diagnosed with an incurable disease. So, patients have to be informed
the experience of having overridden
the family's will for nondisclosure, only
the oncologist answered that he has sometimes overridden it, but he could usually talk with the family to change their
far as physicians tell the patient first, physicians would have nothing to struggle with family's desires for
nondisclosure. Then, that would
happen a very rare. One participant suggested as follows. It is better to discuss cancer
disclosure before diagnostic tests are given in order to
avoid such fights.
From the different viewpoint, one participant said that elderly people tended to ask a physician to make a decision
for them and this must be one of
options in medical decision making, and
stressed that however the physician should make it clear that the
elderly person who was competent
to make a decision has chosen to do so and this fact should be informed to the family.
of four participants made the following suggestion on the above topics. A
physician should pay attention to patients who come from countries that have different cultures, medical
and legal systems. A physician has to know what they desire and follow the
procedures that are comfortable for them (9).
research identified three fundamental principles when physicians in the U.S.
think about the role of family in medical decision making.
1. Giving priority to the
patient's wishes and interests over the family's
All participants said that
they told a patient about his/her cancer diagnosis first as far as the patient
was competent enough to make a medical
decision. Some of them added that whether to inform the family of the patient's diagnosis depended on only the
patient's approval or admission, or that if a patient told a physician not to
inform the family the physician could not override the patient's desire.
the other hand, physicians was expecting the family to be involved in the
process of medical decision-making
helping the patient to understand what's going on and to be a primary caregiver
for providing the patient with physical needs and emotional support.This means that centering the patient on cancer disclosure physicians expects family members to be involved in medical
decision making as a primary
caregiver. It is also said that even if a patient is competent enough to make a medical decision, the patient who has
to be struggling with cancer needs the family's support emotionally and physically.
2. Valuingthe process of informed consent
all participants have spent a lot of time talking with patients
and family members in every aspect of medical decision making. It can be said that physicians value the process up to when
the patients are diagnosed with an incurable cancer involving family members.
3. Paying much attention to
the patient's cultural backgrounds
A physician should do the right thing for patients
who have different cultural backgrounds or follow the procedure that are
comfortable for them. One participant
said "I ask those patients
how physicians of your countries treat you and I try to follow their ways as
much as possible".
This means that the
cultural difference among patients is an important issue for physicians in the
is expected that there will be differences in the above conclusions after
interviewing Japanese physicians. The author is going to interview with the
same number of physicians whose medical specialty and clinical experience are
almost the same in Hokkaido University, Sapporo in Japan, and these will be
author would like to thank Dianne Bartels and John Song of the Center for
Bioethics for the preliminary support of this research. The author is also
grateful to the seven physicians who participated in the interview.
Takanami, Cancer disclosure from recent medical malpractice cases in Japan,
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Nagoya, October 31, 1990 (744 Hanrei-Taimuzu 182); The District Court Decision,
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Akita, March 22,1996 (1595 Hanrei-Jihoh 123)
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Elwyn, Family consent, communication, and advance directives for cancer
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7) Jeffrey Blustein, The family in medical
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