- To know the justification for substitute decision making
- To be able to perform substitute decision making, including in an emergency
Summary of Case ("Malette")
Eleven year old Jennifer Beaulieu has just been rushed into the trauma room following a head-on collision in which her father was killed. Jennifer is unconscious, cyanotic, hypotensive, and in severe respiratory distress. An endotracheal tube and a chest tube and intravenous lines are in place. A large amount of blood drains from the chest. Though Jennifer's blood pressure has stabilized, bleeding continues; emergency thoracotomy is indicated. Her mother, Annette Beaulieu, arrives and informs you that her daughter and she are Jehovah's Witnesses. She forbids blood transfusions, even if her daughter will not survive without them.
The case presentation illustrates two ethical predicaments that occur regularly in surgical practice. The first is the objection by members of Jehovah's Witness faith to accept blood transfusion even if death will result from blood loss. The second problem is substitute decision making. Who can speak for the patient when the patient is incapacitated? Can a substitute decision maker authorize the withholding of treatment that is essential for preservation of the patient's life?
Should we accept the mother's position, or transfuse to save the patient's life?
Take a pedagogic vote, how many would transfuse, how many would not, how many don't know. Ask the residents to justify or explain their position.
Do we have to honour every patient's preference?
Ask the group to develop the justification for their position. For example, many people have unusual beliefs. They may believe that the earth is flat, etc. Beliefs that are firmly held with religious conviction may not coincide with the views of care givers but the patient has a right to hold them. Patients have a right to refuse treatments based in their autonomy. Patients who are incapable of expressing their choice retain their right to choose to refuse treatment. Preferences based on religious beliefs are often among the most deeply held values. Freedom to act on the basis of religious belief is protected by law, and capable patients are not constrained from risking or accepting their own death for religious reasons. In the "Malette" case, the court held that transfusion should be withheld from an unconscious Jehovah's Witness, based on her prior written and verbal expression of belief. The situation changes substantially, however, when the patient is a child. Justice Oliver Wendall Holmes ruled: "Parents may make martyrs of themselves, but they may not make martyrs of their children." In several other cases, the courts have held that children should be given life saving transfusion or other treatments despite parental religious beliefs.
Practical point: Be absolutely sure that the patient holds the beliefs ascribed to her. Sometimes patients whose charts say they are Jehovah's Witnesses will, when asked face to face "Would you allow a transfusion if your life depended on it?", give a very different answer than expected. The most surprising answer I have encountered is "I have never been a Jehovah's Witness and I don't understand why that designation is on my chart."
Who should make decisions for the incapable patient? If there is conflict, whose decision determines the outcome?
This question offers an opportunity to explore the experiences the house staff has had in real situations. Practical advice about negotiating between conflicting family members can include the use of "time outs" or adjournment to a fixed time on the following day, allowing resolution within the family. There are legislative answers to the question about the hierarchy of surrogate decision makers. The hierarchy in Ontario, for instance, is: # An appointed decision maker designated as the "power of attorney for personal care". This designation may be validated legally, court appointed, or nonvalidated. It is not necessary for the physician to see evidence to support the validity of a decision maker who claims to be the designated power of attorney for personal care for an incapable patient;
- Spouse or partner;
- Parent or child;
- Any other relative;
- Concerned friend;
- Public guardian.
In many jurisdictions, a judge, rather than a public guardian, is asked to make a decision on behalf of the patient. In general, judges are very much guided by expressed wishes of patients when they were capable. In the Malette case, the lack of a valid witness and date did not prevent a decision in favour of withholding transfusion.
In general, substitute decisions should be reached by negotiated consensus rather than rank order. A consensus should be reached to avoid acrimony and legal reprisals, particularly when decisions about withholding or withdrawing treatment are made with substitute decision makers.
How should the substitute decision maker arrive at a decision?
Substitutes should try to determine how the patient would decide the issue if capable. Written expressed wishes rank highest as a guide to the incapable patient's choices. Next in order are spoken wishes about treatment, then values and beliefs known to be held by the patient when capable, and finally "best interests". (Best interests refers to the interests of the patient, not those of the surrogates, the caregivers, or other interested parties.) Advanced directives and written designation of a proxy decision maker provide a useful solution to this difficult problem.
Bioethics Bottom Line
In theory, incompetent patients have the same right to consent to diagnostic tests or treatment as competent patients. In practice, however, incompetent patients cannot exercise this right. To address this paradox, policy makers, judges and legislators have developed a system known as substitute decision making to permit others to exercise the incompetent person's right to consent on his/her behalf. Substitute decision making poses two main questions: Who should make the decision for the incompetent person and how should the decision be made? The appropriate answer to these questions varies from one jurisdiction to another and physicians are encouraged to gain familiarity with the legal standards in their place of practice. However, the overall goal of substitute decision making is to approximate the decision the patient would make if he/she were still competent to do so.
The standards for how the decision should be made, in decreasing order of priority, are wishes, values and beliefs, and best interests. Wishes are prior expressions by the patient, while competent, that seem to apply to the actual decision that needs to be made. Sometimes patents will have recorded their wishes in an instruction advance directive. For example, in the case of Malette v. Shulman, the patient's Jehovah's Witness card, stating that no blood transfusion was acceptable even to save her life, is an example of an advance directive. It is important for those involved in the acute care setting to ask family members, nursing home attendants, or other health care providers to provide information about prior written or verbal expressions of the patients desires. Lifesaving interventions may be omitted, if the patient has clearly stated opposition to their use.
If the patient is a child who has never been competent, the best interests standard is involved, and the decision maker is usually the parent. If the parents are not competent, or are not using judgement in the best interests of the child, society provides child protective services and judicial intervention on behalf of the child. Parental refusal of a recommended medical intervention should be respected unless the failure would cause direct and serious harm to the child.
With regard to who should make decisions, the most appropriate person is someone appointed by the patient him/herself, while competent, through a proxy advance directive. Other substitute decision makers, in their usual order of priority, include a court-appointed guardian, spouse, child, parent, brother or sister, any other relative or concerned friend. In some jurisdictions a public official will serve as substitute decision maker for a patient who has no substitute decision maker available.
Lazar N, Greiner G, Robertson G, Singer PA. Bioethics for clinicians: 5. Substitute decision-making. CMAJ 1996; 155: 1435-7.
Jonsen AR, Siegler M, Winslade WJ. Clinical ethics. 4th ed. New York: McGraw Hill; 1997. p. 63-5, 74-7, 92-4.
Teaching Aid: Standardized Patient Case
This is a case in which several residents might relieve each other in order to get more than one approach to the surrogate's refusal of treatment. It is best to have residents come down and participate directly with the simulated patient rather than give opinions or suggestions from their chair. Be sure that the critical issues are covered. Namely,
- the seriousness of the patient's condition;
- whether other family members who should be involved in decision making are available and who is the appropriate decision maker;
- whether the issue has been actually discussed with the daughter surrogate decision making mother;
- whether the patient still believes in Jehovah's Witness teachings;
- whether Jennifer would still choose "no blood" knowing it would mean her death;
- whether Mrs. Beaulieu understands that Jennifer will die without transfusion.
Instructions to Resident
You are a physician working in the Emergency Department. Eleven year old Jennifer Beaulieu has just been rushed into the trauma room following a head-on collision in which her father was killed. Jennifer is unconscious, cyanotic, hypotensive, and in severe respiratory distress. An endotracheal tube and a chest tube and intravenous lines are places. A large amount of blood drains from the chest. Though Jennifer's blood pressure has stabilized, bleeding continues; emergency thoracotomy is indicated. Her mother, Annette Beaulieu, arrives and informs you that her daughter and she are Jehovah's Witnesses. She forbids blood transfusions, even if her daughter will not survive without them.
Instructions to Standardized Patient
Your name is Annette Beaulieu. You are a married woman with 2 children. Your 11 year old daughter has just been brought to the Emergency Department as a result of a head-on collision with a truck on the highway. Police have informed you that your husband was killed in the accident. You have no siblings
You are now in the Emergency Department of the hospital. You are upset but not hysterical. You urgently want to know about your daughter's status and what treatment is being undertaken. You have asked to see the physician looking after her. You begin by asking questions about her condition, e.g. How is she? How serious is it? Is she going to make it? What's been done so far? (Do not bring up the Jehovah's Witness issue right away.)
If candidate does not bring up the Jehovah's Witness issue, you could say things like:
- Do you know she's a Jehovah's Witness?
- Have you seen her card stating no "blood transfusions to be given"?
- I hope you're not planning on giving her any blood.
- A fundamental tenet of our faith forbids blood transfusions, and I know my daughter would not want a blood transfusion.
- If you want me to sign something, I will. I don't want anyone here to be liable for what might happen. I know what my daughter would want. I'll take responsibility for the decision.
As a Jehovah's Witness, you believe that blood is the soul and receiving blood would defile the body, would make you "dirty" - like being "raped". You know your daughter would not accept a blood transfusion because she would want to maintain her good relationship with God and obey his commandments. She is willing to risk her present life rather than go against her religious beliefs. You know your daughter believes she will be rewarded for complying with God's law commanding abstention from blood. You are sure this is for her everlasting good. Any medical procedures not involving blood would be perfectly acceptable.
You can carry a bible and be familiar with passages that support the tenet of "No Blood".
"That ye abstain from meats offered to idols and from blood...from which if ye keep yourselves, ye shall do well..."
"But flesh with the life thereof, which is the blood thereof, shall ye not eat..."
"Therefore I said unto the children of Israel, No soul of you shall eat blood, neither shall any stranger that sojourneth among you eat blood."
"For it is the life of all flesh; the blood of it is for the life thereof: therefore I said unto the children of Israel, Ye shall eat the blood of no manner of flesh: for the life of all flesh is the blood thereof: whosoever eateth it shall be cut off."
Be prepared to answer questions such as:
- Is there anyone else who should be here to help make this decision?
- What do you know about your daughter's prior wishes?
- Does she still believe in Jehovah's Witness teachings?
- Is the card a valid reflection of her true wishes?
- How do we proceed from here?
- Do you know what will happen if we don't give her any blood?
- Do you think your daughter would still choose "no blood" if she knew she could die?
Prompts are used to standardize the scenario and give all candidates an opportunity to address relevant issues.
How is my daughter? How serious is it? Is she going to make it? What have you done so far?
PROMPT 2 (by 2 - 3 minutes)
What happens next?
PROMPT 3 (by 3 - 4 minutes)
I don't think she would want a blood transfusion. Do you understand what I'm saying?
PROMPT 4 (by 4 - 5 minutes)
Does she have the right to refuse the blood?
Are you going to give her blood (transfuse her)? What are you going to do?