Modules

Consent and confidentiality

Part 2

In “Part 1,” we were introduced to a serious problem. After their meeting with Dr. Randall, Mike and Janice talked a lot. They have now returned to the physician’s for a follow-up appointment. Janice, Mike and Dr. Randall discuss the options for Janice and her pregnancy.

Reflective exercise 2

Read the five options presented and the questions arising from them to see how the option would transpire in the physician-patient relationship. Use the questions associated with each option to guide your decision making. After completing the reflective exercise, you might want to read the commentary on the exercise, and/or consult some of the resources at the end of the case.

You have told Janice that she is also HIV positive and she and Mike come in to discuss their concerns about continuing the pregnancy. Read the following options and think about how you might respond to their questions and concerns.

What would you do?

Dr. Randall: I’m glad you could both come in today. So Janice, have you decided how you want to proceed?

Janice: Well, I’m just a little bit confused.

Dr. Randall: I’m sure I can clear up some of that confusion.

Janice: How do we know the baby even has HIV? I mean, I can’t bear the thought of inflicting that on my child.

Dr. Randall: Well, we do know that with treatment the risk of transmission is drastically reduced.

Janice: But will I be able to breastfeed?

Dr. Randall: I’m afraid that won’t be possible.

Janice: What about an abortion? I mean maybe we shouldn’t even have this baby. What if I get sick and I can’t take care of it?

Mike: No, I want Sam to have a brother or a little sister.

Janice: Well, you lost the right to that decision when you were so careless about us.

Mike: No, I’m the father and I have the right…

Janice: No, you weren’t thinking about that, were you!

Dr. Randall: Mike, Janice, I know these are challenging circumstances but I think it’s best if you try to discuss calmly the options that are open to you and considering the situation, I suggest you see a counselor to help you through it.

Janice: What about an abortion? I mean maybe we shouldn’t even have this baby? What if I get sick and I can’t take care of it?

Dr. Randall: Well, abortion is a possible option and if that’s the route you two want to go I’m going to have to refer you to another physician. My personal convictions don’t allow me to be involved in this procedure. I do have a physician that I refer patients to in that case and I can assure you he’s very competent.

Janice: What about an abortion? I mean, what if I get sick and I can’t take care of the baby? Maybe abortion is best for everyone.

Dr. Randall: Janice, treatment for HIV has very positive outcomes nowadays you probably have very many healthy years ahead of you. You have to be sure about which path you choose to take. You know, for many people, abortion is infanticide and, you’re going to have to live with that decision for the rest of your life. You have to be sure how you feel about killing your baby.

Janice: Doctor, I’ve been doing a lot of reading since I last saw you about HIV and the treatment and well I just don’t feel comfortable putting those toxins in my body. I mean, I’m very concerned about the baby.

Dr. Randall: Janice, you’re going to require treatment. Without treatment you could get very sick and you wouldn’t be able to take care of the baby.

Janice: But isn’t there a chance that the baby wouldn’t even have HIV?

Dr. Randall: Without treatment the risk of transmission is about 25 percent, that’s very high. With treatment, the risk is less than two percent.

Janice: So you’re saying that the baby could have HIV with or without treatment?

Dr. Randall: The risk would be significantly reduced.

Janice: But everything that I’ve been reading says that people are living today with HIV.

Dr. Randall: Because they’re receiving treatment and treatments have improved greatly over the past years. You know what? I think I should set up an appointment for you at the HIV clinic. They’ll be able to give you all the information you need to make the best choices for you and for your baby. Do I have permission to do that?

Janice: Yeah.

Dr. Randall: All right.

Janice: But will the drugs make me sick? I mean, I heard they can make me gain weight and they can even cause brain damage.

Dr. Randall: There are side effects with the drugs that are used nowadays but they’re much better than the drugs used in the past. People with HIV live long healthy lives. We are going to have to talk about your insurance coverage. These drugs can be very expensive.

Mike: We have a benefit plan.

Dr. Randall: But that might not cover the more expensive drugs, some of them can be as high as $25,000 to $30,000 a year.

Mike: Who can afford that?

Janice: I mean that’s just… That’s just unfair. How do people manage that, I mean what are they saying only wealthy people deserve treatment?

Dr. Randall: There are programs that exist to help cover the costs of coverage. I’ll have my secretary give you the information on your way out.

Janice: What are we going to do?

Commentaries

Commentary on option 1
The legal answer is that Mike has no rights with regard to any decisions made about the unborn baby. Canadian law clearly states that, until birth, the fetus is considered part of the woman and has no rights as an individual, and nor does the biological father. The pregnant woman’s autonomy in decision making must be respected. However, in the interest of maintaining their relationship, it is incumbent upon Dr. Randall to try to help the couple come to a decision that both of them agree upon, even if it is a compromise.

To do this, Dr. Randall might have to tell Mike that the decision is Janice’s to make. This requires a great deal of sensitivity in communication skills, and if Dr. Randall feels he cannot adequately deal with the crisis, he might refer them to another health professional with more expertise. In doing this, he would be behaving responsibly by understanding his own limitations and in his knowledge of other health-care resources. (See “Community resources” below)

Commentary on option 2
The subject of abortion engenders an emotional debate. We cannot discuss in this commentary the complex issues of pro-choice versus pro-life. The point of this exercise is for you to reflect on your ethical position on abortion. Physicians’ personal values, deeply embedded in their background and culture, will influence their professional behaviour. It is important to be aware of our values so that they do not inappropriately influence our relationships with patients. The physician’s responsibility is to help the patient come to the best decision for themselves. If the patient is competent, the physician must respect their autonomy, even if they think that the decision is wrong, or even irrational, as long as the patient is competent, his or her autonomy must be respected.

On the other hand, physicians are not expected to behave in what they truly believe is an unethical way just to support the patient’s autonomy. If, after a full discussion, Dr. Randall feels that Janice has made an informed decision to have an abortion, he must support her in that decision. If he feels he cannot do so because of his own personal principles, he must arrange for alternative care. To not do so would constitute abandonment.

Commentary on option 3
Dr. Randall might truly believe that it is in Janice’s best interest to dissuade her from having an abortion (beneficence), but if so, he did not approach it in a correct way. In using expressions like “killing the baby,” Dr. Randall is imposing his beliefs on Janice. Janice is neither free nor informed in this consent process. Dr. Randall should keep his personal values about abortion to himself.

Physicians must be alert to their potential of using subtle forms of coercion.

Commentary on option 4
The competent pregnant woman has the right to refuse treatment, even if it results in injury to or death of the fetus (see Commentary on option 1). The prevailing view is that only the woman herself can weigh all the options in her particular situation, especially if the issue involves her health and that of the baby.

Having said that, the courts have occasionally supported fetal rights (e.g., a glue-sniffing pregnant woman was incarcerated in order to protect the fetus). The preferred approach is to discuss with the woman the reasons for her decision in order to make sure she has no misconceptions and is making a fully informed decision.

Consent

Consent in Canada has three parts:

  1. It must be based on informed disclosure
  2. The patient must have the capacity to provide their consent
  3. The patient must be able to voluntarily provide their consent

Disclosure

The issue of how much information to give a patient is the source of much debate. Giving too much information can be confusing and/or frighten a patient. Too little, and the patient is unable to make the best personal choice.

In some societies, the question to ask is what physicians in similar settings would divulge. This might be viewed as paternalistic, placing the physician’s idea of what is best above that of patient autonomy.

In many western societies, the question to ask is what a reasonable patient would want to know. This shifts the focus to the patient, but still allows the physician to determine what is the “reasonable patient” level.

In Canada, following the Reibl v. Hughes case, the question became what a reasonable person in this particular situation would want to know. This places a greater responsibility on both the physician and patient. Consider the following situation:

You are recommending that a patient get surgery for carpal tunnel syndrome. How does your disclosure differ if:

  • The patient is a foster mother working in the home?
  • The patient is a computer programmer?
  • The patient is a professional violinist?

Failure to provide adequate information negates the voluntary nature of the patient’s response. The physician therefore has to either know the patient very well or explore the patient’s situation thoroughly to be sure that consent is truly informed. Most patient complaints with regard to physicians obtaining consent relate to inadequate disclosure.

Looking back at Janice’s reaction to the news about the HIV test, was her consent to “routine” blood testing truly informed?

With regard to capacity, the patient must be told and be seen to understand the information provided. The issue of capacity usually arises in cases involving mental illness or cases involving pediatric or elderly patients. There are very good protocols for determining capacity (see Joint Centre for Bioethics).

Voluntariness means a lack of coercion on the part of the physician. This coercion can be quite subtle and often is done either unconsciously or in good faith — you know what you are recommending is good for the patient’s medical problem. It might be difficult to understand why a rational person would reject your advice. Exploring the reasons might be required. On the other hand, the commercialization of medicine in some countries could have led to a “take it or leave it” attitude in physicians. “Here is my product (operation, treatment). If you want it, fine, if you do not, fine.”

The communication skills required in dealing with the consent process are among the most challenging in medical practice. How do you think Dr. Randall did? What might you have done differently?

To find out more about the consent process, read the articles at the end of this case.

In the clinical encounter, information is exchanged between the physician and the patient. In the first part of most interviews, patients usually provide information about their health concerns. In the later stages of the interview, the physician usually gives information back to patients, either discussing what the physician thinks the problem is or explaining and/or obtaining consent for investigations, treatment or counselling.

Counselling is a specific type of medical communication and involves more than simply giving information to the patient. During counselling, the physician is usually advocating for the patient to change their attitude and/or behaviour, with the goal of improving the patient’s health. Such health promotion counselling is particularly important in Canadian medicine, since outcomes related to substance abuse, obesity, smoking and treatment non-adherence consume a large part of our health-care resources.

A model commonly used to help physicians with counselling is that of Prochaska, who described five stages people go through in behavioural change (J.O. Prochaska, 1995).

  • Precontemplation
  • Contemplation
  • Preparation
  • Action
  • Maintenance

The physician’s responsibility is not to tell patients what they should do, but rather to determine at what stage of change the patient is at, and to help them adopt healthier behaviour by suggestion, support and facilitation.

See the Sexual history section in the Communication skills module.

There are certain types of counselling that other health professionals might be better at conducting. They may have expertise in a certain area, and be able to spend more time with the patient as well. Following are some examples:

  • Dieticians who take a detailed dietary history and provide nutritional counselling.
  • Alcohol withdrawal programs such as Alcoholics Anonymous.
  • Smoking cessation clinics.
  • Social workers and clinical psychologists who deal with many kinds of stressful life situations.
  • Disease-specific educational/counselling services such as for diabetes, asthma or cystic fibrosis.

Not all services will be available in all areas and, in certain cases, may not be covered by provincial or territorial funding.

What type(s) of counselling do you think would be helpful to Janice and Mike?


 

Next: Part 3

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