The 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
Present: College of Medical Technology, Hokkaido University, Kitak-ku N-14 W-5, Sapporo 060-0812, Japan
E-mail: Staka@cme.hokudai.ac.jp
Eubios Journal of Asian and International Bioethics 12 (2002), 216-9.


Abstract

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.

Introduction

In 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.

The purpose

The 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.

Methods

Interviews 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.

The 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.

The 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.

Findings

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:

If nobody knows what has happened to a patient, there is no way for the patient and family to talk about real things.

Family usually 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.

Because 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;

Family should give informed consent to diagnostic tests or treatments on behalf of the patient.

The family should have a good relationship with the patient to spend the precious time of dying and death.

Family members 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,

Patients 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

Facts that a patient has a lot of questions.

2) From where participants acquired such principles...

Personal clinical experience and ethics

Patient's expectation

Medical training and practice

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 suffering.

Family members help the patient understand what's going on him/her and make a medical decision.

Participants who 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?

Under 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 decides.

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.

Two 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.  

Two participants had no experience.

4. Have you ever overridden the family's will for nondisclosure?

 One 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 making.

Discussion

Question 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.

The 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.

Question 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 patient.

 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 family.

 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 medical decision.

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.

Question 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.

Regarding 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 patient.

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).

To 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.

One 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 about that.

Regarding 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 mind.

As 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.

Three 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).

Conclusions

This 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.

On 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

Almost 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 United States.

It 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 reported later.

Acknowledgment

The 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.

References

1) Sumiko Takanami, Cancer disclosure from recent medical malpractice cases in Japan, EJAIB 12 (2002),19-21; The Appellate Court Decision, Nagoya, October 31, 1990 (744 Hanrei-Taimuzu 182); The District Court Decision, Tokyo, March 31,1994 (1522 Hanrei-Jihoh 104); The District Court Decision, Akita, March 22,1996 (1595 Hanrei-Jihoh 123)

2) Akira Akabayashi, Michael D Fetters and Todd S Elwyn, Family consent, communication, and advance directives for cancer disclosure: a Japanese case and discussion, JME 1999; 25: 296-301; Michael D Fetters, The family in Medical decision making: Japanese Perspectives, The Journal of Clinical Ethics, Summer 1998,132-146; Atsushi Asai, Barriers informed consent in Japan, EJAIB 6 (1996),91-93.

3) Susan Orpett Long, Family Surrogacy and cancer disclosure: Physician -family negotiation of ethical Dilemma in Japan, Journal of Palliative Care 15:3,1999.31-42.

4) Jay Katz, The silent world of doctor and patient, The free press, New York, 1984.

5) Mark G. Kuczewski, Reconceiving thefamily - the process ofconsent in medical decisionmaking, Hastings Center Report, March-April 1996, 30, 30-37

6) John Hardwig, What about the family, Hastings Center Report, March-April 1990,5-10

7) Jeffrey Blustein, The family in medical decisionmaking, Hastings Center Report, May -June 1993, 6-13.

8) Carin E.Reust, Susan Mattingly, Family involvement in medical decision making, Family Medicine 28(1) 1996, 39-45; Joanne Lynn, Family role in health care decision making, Trends In Health Care, Law & Ethics 8(1) 1993, 57-64.

9) Jimmie C.Holland, Hie-Won YvonneL.,Hann, To tell the truth: A cancer diagnosis in other cultures is often a family affair, Journal of the National Cancer Institute 91(22), November 17 1999,1918-1919.

Go back to EJAIB 12 (6) November 2002
Go back to EJAIB
The Eubios Ethics Institute is on the world wide web of Internet:
http://eubios.info/index.html