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. Three of them have videos. 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’ve both come in today. Have you decided about how you want to proceed?

Janice: Well, mostly I’m just confused.

Dr. Randall: I hope I can clear up some of that confusion.

Janice: How do we know if the baby’s HIV positive? I mean, I can’t bear the thought of inflicting that on my baby …

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

Janice: Will I be able to breastfeed?

Dr. Randall: I’m afraid that’s not going to be possible.

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

Mike: No, no, I want Sam to have either a brother or a sister and …
(Janice begins to get upset with Mike)

Janice: Well I think you lost the right to that decision when you were so careless about us …

Mike: No … no … I am the father and I have the right to say …
(interrupting)

Janice: Well you weren’t thinking about that, were you?
(physician seeing the situation escalating attempts to calm them down)

Dr. Randall: Mike, Janice, I know that you are feeling a lot of tension between you. Look, this is a very challenging situation and you both have very strong feelings. I think we should try and discuss the options open to you. Look, as I said, this is a very difficult situation … I think you should see a counsellor to discuss the stresses that are on the both of you and on your relationship.

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: Abortion is a possible option. If that’s the route you two want to go, I would have to refer to you to another physician. My personal convictions don’t allow me to be involved in that procedure. I do have physicians that I refer patients to for that and I can assure you that they do a very good job.

Janice: What about an abortion? I mean, maybe we shouldn’t even have this baby? What if I get sick, how am I going to take care of it? Wouldn’t it be better for everyone if I just had an abortion?

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 very sure about which path you choose to take. For many people, abortion is killing a baby. You’re going to have to live with that decision for the rest of your life. You have to be very sure how you feel about killing your baby.

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

Dr. Randall: Janice you are 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 it possible that the baby might not even be infected with HIV?

Dr. Randall: Without treatment, the chance of transmission is around 25 per cent, that’s very high. With treatment, the risk of transmission is less than two per cent.

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

Dr. Randall: But there’s a significantly reduced risk …

Janice: Yeah, but … everything that I’m reading says that people are living today with HIV.

Dr. Randall: … because they’re getting treatment and treatments have improved significantly over the past years. Look, I think I should make an appointment for you at the HIV clinic. They’re gonna be able to give you the information you need to make the best choices for you and for your baby. Do I have your permission to do that?

Janice: Yeah … thank you.

Janice: Are the drugs going to make me sick? I heard that they can make you gain weight and can even cause brain damage.

Dr. Randall: The drugs that they are using now do have side effects but they are much better than the drugs they used to use in the past. People are living long healthy lives with HIV … as long as they get proper treatment. We are going to have to talk about the kind of coverage you have though. These drugs can be expensive.

Mike: We have a benefit plan.

Dr. Randall: Well, they probably won’t cover the more expensive drugs. They can be outrageously expensive, as high as $25,000-$30,000 a year.

Janice: I mean, what do people do?

Mike: Yeah, who can afford that?

Janice: This is just, you know, it’s … it’s too much, it’s unfair. What are they saying, that only the wealthy people deserve treatment?

Dr. Randall: Well, there are programs that exist to assist you with the costs of treatment. I’ll have my secretary look into it and she’ll get that information to you as quickly as possible.
(Janice turns to Mike)

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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