Tse Chun Yan

My commentary 10 minutes to comment on the paper by Fan Ruiping

5 minutes on my pragmatic approach to Jacqueline’s case

Fan’s paper (2004) “Chinese medical ethics, even today, in theory and in

practice remains committed to hiding the truth as well as to lying when necessary to achieve the family’s view of the best interests of the patient.”

Views and practices have been changing recently

Whether patients should be informed of the illness

Patients: 98.0% yes

Family: 66.7% yes

Patient’s right to be informed has been regulated by law.

Participants think that about 75% of patients would like to be informed first, independent of family.

Collusion should still be common in China

Still important to review the justification for deceiving the patient

Fan’s view on family deciding on behalf of the patient

Fan considers “family as autonomous entities and the source of legitimating authority.” This emphasizes the importance of the family in the decision-making process.

However, this does not necessarily mean deceiving the patient.

Fan’s view on deceiving a competent patient

A necessary condition is that deceiving the patient is in the patient’s best interests.

Why is deception in the best interests of the patient?

“if the physician were to communicate the truth … the result would be a constellation of harms ranging from a feeling of hopelessness to a refusal of needed treatment or even an attempt to commit suicide.”

Two questions not addressed in Fan’s paper

Are there ways to reduce the harms on breaking bad news?

Can deceit avoid these harms?

Can deceit avoid these harms?

Not many patients would remain ignorant of the illness

There is little evidence that terminally ill patients not told the truth die happily in blissful ignorance. (Fallowfield 2002)

Fan’s paper: Not easy to keep information from patients; Some will know; A number of reasons were listed.

When the patient knows the bad news, the psychological harm will still occur.

Extra harm to patient on guessing the diagnosis himself/herself A conspiracy of silence usually results in a heightened

state of fear, anxiety and confusion.

Undermines trust towards the clinical team.

Breakdown of communication with family members.

Patient unable to: obtain information he/she wants to know;

express emotions on knowing the bad news;

obtain appropriate psychological and spiritual support;

make suitable plan for his/her limited future with the family.

Patient may pretend that he/she does not know, in order to please the family members.

Are there ways to reduce the harm to patient on breaking bad news?

A sensitive communication with good knowledge and skills in breaking bad news.

Not “truth dumping”

Good psychological, social and spiritual support after the bad news is broken.

Preference for non-disclosure is not culture specific

In the 1960s in the USA, 90% of doctors preferred nondisclosure. The attitude dramatically changed in the USA in less than 20 years.

Culture should not be used as an excuse to avoid tackling collusion.

In the majority of cases, if the patient wants to know, the doctor should disclose the truth

In a sensitive way by a doctor with good knowledge and skills in breaking bad news.

Not “truth dumping”

Good psychological, social and spiritual support after the bad news is broken.

Also need to address cultural issues

Respect the desire for family involvement in the communication and decision-making process among Chinese patients.

How to handle a request for non-disclosure by family

Understand the family’s point of view.

Understand the patient’s true preferences for receiving information.

Take an incremental approach to resolving requests for nondisclosure.

Continue to work with and include the family at key time points.

Mary S. McCabe et al

“When the Family Requests Withholding the Diagnosis: Who Owns the Truth?”

Journal of Oncology Practice 2010

The approach must be individualized

Find out how much the patient knows and how much the patient wants to know

Are there any legal reason why disclosure has to be made?

Patient does not want to know

Could be denial or avoidance as a defense mechanism to anxiety.

Should not break the defense mechanism without appropriate support.

May withhold information, but do not lie.

Needs to reassess the situation as the disease progresses.

There is a small chance for the patient remaining in “blissful ignorance” until death

Why not try deception first, and then change the strategy when the family members find out that the patient has already realized the seriousness of the illness?

Problems Violates autonomy.

The initial deception undermines trust.

How do you know that the patient already guessed the diagnosis?

Patient may pretend that he/she does not know, in order to please the family members, and suffer from the harm in private.

Confucian view on deception

I am not a philosopher, and I would not comment on this. But I will quote one view from Chinese medicine writing.

Chinese medicine writing

《醫學入門》(明 李梴)

Introduction to Medicine (Ming Dynasty) 既診後，對病家言必以實。

After the diagnosis, one must tell the truth to the patient.

或問一言為約，曰：不欺而已矣。…… 診脈而不以實告者，欺也。

If one uses a single word as our contract with the patient, it should be `no deceit’ . . . If one does not tell the truth after diagnosis, it is deceit.

古今圖書集成醫部全錄

Jacqueline’s case

The patient does not want to know, and wants her son to make decision for her.

Her son does not want the patient to know.

Surgeon wants the patient to know the diagnosis and to consent before the surgery.

The approach must be individualized

Find out how much the patient knows and how much the patient wants to know.

The patient does not want to know.

Are there any legal reason why disclosure has to be made?

HK Medical Council Code of Professional Conduct

In law, a doctor cannot perform medical treatment without consent.

Consent for surgical procedures involving general/regional anaesthesia must be given in writing.

Consent is valid only if:-

(a) it is given voluntarily;

(b) the doctor has provided proper explanation; and

(c) the patient properly understands.

Legally, disclosure must be made before the patient can consent for surgery

Can we just disregard the view of the patient and her son?

Step 1

To discuss with the son about whether surgery should be done for the patient.

Should not have confidentiality problem, because this is the request by the competent patient

If the son agrees to surgery, then step 2

Step 2 To explain to the son sensitively:

Legally, the patient has to be properly informed and to consent to surgery before surgery can be done

It is actually better to disclose the diagnosis and explain the operation to the patient sensitively, than to have the patient find out herself what is wrong and what has been done

If the son agrees, then step 3

Step 3 To explain to the patient sensitively:

The doctor has followed her request to discuss with her son

Her son has decided that surgery should be done for her condition

However, she needs to consent to the operation herself, and thus the doctor has to discuss with her directly

If the patient agrees to discuss her illness, then step 4

Step 4

To break the bad news and to discuss the treatment plan sensitively, and to obtain a proper consent.

Going through these steps and with agreement by the son and the patient, the disclosure does not violate any ethical principles

What can be done if

the son does not agree to disclosure? or

the patient does not want to discuss the illness?

Discuss further By a senior clinician with good knowledge and skill in

breaking bad news.

Try to explore the concerns of the son and/or the patient, and to assess any misconceptions, denial and anxiety, and to provide clarification and support.

At the end, you will succeed.

Thank you!