Plain Language Summaries

VP-Net End-of-Life Ethics and Decision-Making Forum
June 9, 2008

PLAIN LANGUAGE TRANSLATION

Morning Session with Joe Kaufert and Rhonda Wiebe

Introduction to the End of Life and Decision-Making Conference

Today we are talking about the ethics, or rights and wrongs, behind the idea of stopping or taking away medical treatments that are keeping patients alive. In medical language this is called "withholding" (stopping) and "withdrawing" (taking away) medical treatment. These patients we are talking about may be at the end of their lives and may die. The treatments cannot cure them or may not make them better. The treatments can keep them alive for longer. The question that we want to talk about is how doctors decide who gets treatments, who has treatments taken away and who doesn’t get treatments at all.

There are a few main points that you can think about while this discussion is going on:

1. The College of Physicians and Surgeons of Manitoba is a group of doctors who make the rules that all doctors in Manitoba must follow to give patients good care.
2. This group of doctors has made some new rules for doctors to follow about withholding and withdrawing treatment for patients. One of the most important parts of the new rule lets doctors decide not to give treatment to a patient, even if the patient or the patient’s family wants the treatments.
3. If a patient is dying, the patient may not be able to say whether or not he or she wants treatment. If he or she cannot talk to the doctor, the patient’s family might tell the doctor what the patient wants. Sometimes the patient or family and the doctor disagree about whether the patient should get treatment or not.
4. Some people do not think that it is right or fair for a doctor to say no to treatment if the patient or family wants treatment.
5. Some doctors do not think it is right or fair to treat a patient if they think the treatment will not benefit the patient or help the patient in any way.
6. The decision to treat a patient or not to treat a patient is a hard one to make. It is even harder if the patient has a disability. Sometimes people without disabilities, including doctors, do not think that people with disabilities have good lives. This is sometimes called quality of life. But the people with disabilities and their families might disagree with the doctors. They might think their lives are really great and want treatment.

Today, people are going to talk about withholding and withdrawing treatments, the new rule, what they think is fair and right and why.

PLAIN LANGUAGE TRANSLATION

Morning Session with Bill Pope

Summary of the College of Physicians and Surgeons Statement on Withholding and Withdrawing Life-Sustaining Treatment

I will review the College of Physicians and Surgeons rules about withholding and withdrawing life-saving treatments. Withholding and withdrawing treatments means taking away or not giving treatments to patients nearing the end of their lives.
First, I should point out that it has taken a number of years or working with medical professionals to write the new rules.

There are a few basic things you should know about the law in Manitoba today:
The first is that patients have no legal right to demand that a doctor give them life sustaining treatment.

The second is that a family member or friend cannot make medical decisions for a patient unless there is a formal legal document that gives that person the right to make medical decisions. If a person has the legal right to make medical decisions for someone else, they are called a ‘proxy’.

Third, courts have said that doctors have the power, in some cases, to take away or not give treatments even if the patient or family wants those treatments.
Now I am going to talk about the new rules that must be followed by all doctors. I am going to talk about six different situations that might happen and what the rules say.

1. A doctor can stop treatments or not treat when a patient/family/proxy agrees that there should be no treatments.
2. If a doctor wants to treat but a patient/family/proxy doesn’t want treatments, the doctor cannot treat.
3. If a doctor does not want to treat a patient because he or she will not recover enough to have the treatments but the patient/family/proxy wants the treatments, the doctor can refuse to treat after talking with another doctor. Before the doctor can refuse the treatment, he or she must tell the patient/family/proxy first.
4. If a doctor does not want to treat a patient, even though the patient might recover enough and the patient/family/proxy wants the treatments, the doctor has to talk to another doctor. If the second doctor says treatment should go ahead, the patient must get any treatment, the doctor must try to reach an agreement with the patient/family/proxy. If an agreement cannot be reached, the doctor must let the patient/family/proxy know that he/she will not give treatments after four days. If the patient cannot make a decision and if there is no proxy, the doctor does not have to let the family know that he/she is refusing to treat.
5. If there is an emergency and a doctor cannot talk to the patient/family/proxy, the decision to treat is up to the doctor.
6. If a patient’s heart stops working, a doctor does not have to give treatment if he or she thinks the treatment will not help the patient. The doctor must try to let the patient/family/proxy know that the treatment will not be given.

PLAIN LANGUAGE TRANSLATION

Afternoon Session with George Webster

Between a Rock and a Hard Place: Is the CPSM Statement an Ethical Remedy?

Today I will talk about the new rules made by the College of Physicians and Surgeons of Manitoba about withholding and withdrawing treatments. This rule is supposed to help doctors decided whether to take away or not give life-saving treatments to patients.
The main question I want to talk about is whether or not these rules are fair when the doctor and patient disagree about giving or taking away treatments.

I do not think that these rules are fair where doctors and patients disagree. I have three reasons why I do not think there is fairness.

The first reason I think these rules are unfair is because the rules say that doctors have the final say in whether or not to give or take away treatments. This is a problem for two reasons. First, there is no law that says that doctors definitely have the final say in making this decision. Second, the decision about treating a patient or not treating a patient is a hard and complicated one because doctors are making ethical decisions. These are ethical decisions because doctors are asking whether or not these treatments are worthwhile. To answer this question, doctors are making a judgment about who to treat and who not to treat.

It is the patient who suffers if decisions are made to take away treatments or not to treat at all. Because of this, the patient must be the main person to make this kind of decision.

The second reason I think these rules are unfair is the idea of a minimum goal of treatment. The idea of a minimum goal of treatment is about whether the patient can recover enough after getting the treatment. This is the test doctors use to decide whether or not to take away or give treatments. But I wonder where this test comes from and what it really means. I have 26 years of experience in this area and I have not come across this term before.

I also see this test of minimum goal of treatment as a serious problem for vulnerable people, who may be thought of as unworthy patients for treatments.

The third reason I think these rules are unfair is the way in which disagreements are to be settled. The rules here clearly show that the doctor’s decision is more valuable than any decision made by a patient’s family. I say this because the rules say that when there is a disagreement between the doctor and the patient’s family, the doctor does not even have to tell the family that treatment is going to be stopped. I think this is a very bad way to resolve such a serious disagreement when someone’s life is on the line.
In my opinion, a doctor should not be making the final decision. A better way to solve the disagreement is to have a third party, someone who is not involved in the disagreement, sit down with the doctor and the family to try to come to an agreement. This third party should be a judge in a court.

This way of solving the disagreement would let patients, families and doctors all be a part of the decision-making process.

PLAIN LANGUAGE TRANSLATION

Afternoon Session with Merril Pauls

How do we decide which patients get treatments to keep them alive and which patients don’t?

There are always times when there are more people who need health care treatments than there are doctors, nurses, equipment, or money to give that treatment.

The question I will be discussing is how we decide who will get the treatments and who won’t.

Usually, when we talk about these kinds of hard questions, we talk about ethics, which is the idea of rights and wrongs. We also talk about ideas of what is fair and what is just.
So when it comes to making choices about who gets treatments to keep them alive, how do doctors know who to choose? How doe they make these really tough decisions?
One way that doctors can make these decisions is in their role as a professional. This gives the doctors a chance to talk with other doctors, the patient, and the patient’s family when making this decision.

While there are good and bad things about each of these, I believe that the professional role is the better one. But I also feel that our society has a responsibility to help doctors and patients and families when these decisions are being made.

I feel we should move away from one doctor making a decision on his or her own. Instead, the doctors should talk to each other, and talk to patients and families, and make policies or rules which would help doctors decide what to do.

These policies would help to make sure that all patients are treated fairly and justly. These policies would also make sure that doctors were accountable or responsible for the decisions made.

When we talk about treatments to keep people alive, we sometimes use the word ‘futility’. The problem with the word futility is that it can be used to mean different things.

Sometimes futility means that the treatment won’t work for a patient in a certain situation.

Other times, futility means that giving the treatment will not change the outcome or what will happen anyway.

Futility can also mean that some people don’t think it is worth it to give the treatment.
Finally, futility can mean that a doctor does not believe in that treatment.

Because futility can be used in so many different ways we need to be very careful when someone says that a treatment should not be given because it is ‘futile’.

In some cases, doctors and nurses believe a treatment is hurting the patient, even if the family does not think so. This can be very upsetting for doctors and nurses. While the doctors and nurses would like to stop the treatments in these cases, it is not clear why their wishes should over-rule the family’s wishes.

PLAIN LANGUAGE TRANSLATION

Afternoon Session with Jim Derksen

Focused Concerns of People with Disabilities on Ending of Life

Why people with disabilities are worried about the new end of life treatment rules. As people with disabilities, we know that there are many people in our society who think that having a disability is not a good thing. They also believe that because we have disabilities, our lives are not worth very much. Because the assumptions that people in our society make about living with a disability focus on the bad things, we are at risk for not getting treatments that people without disabilities might get. People with disabilities fight hard to make sure our rights are protected and the laws are followed so we can feel safe.

We think there are two major problems with the College of Physicians and Surgeons new rules on end of life treatments.

Our first concern is the use of the words "minimum goal of treatment." This goal is wrong as it creates a second class of people-people with disabilities. Some people may never be able to achieve this goal of treatment. That means they will never get the chance to have these end of life treatments.

Our second concern is the rule that gives doctors the final say about giving treatments. Patients, their families and society may all play a part in making these kinds of decisions. It is wrong to allow only doctors to make this final decision about ending someone’s life. If agreement cannot be reached, the courts must decide, based on our laws, whether or not to end someone’s life.

PLAIN LANGUAGE TRANSLATION

Town Hall Session with Marie Edwards

In January, the Winnipeg Free Press newspaper asked readers a question. They asked whether or not readers agreed with the College of Physicians and Surgeons new rule on treatments at end of life. Most people did not agree.

There are some questions we need to think about. To start with what does "ultimate authority" mean when making decisions on treatment and their family making those decisions when they are too sick to decide? When deciding on treatment, is there a difference between taking away treatment and not giving treatment? Who should decide what treatments to give patients and how do they decide? Who decides when it is time to stop treatments and how do they decide? Can a patient or family demand treatment when a doctor does not want to give the treatment? Doctors and nurses have professional duties they must follow. Do these questions change their duties? And if we want patients, families and doctors to agree on treatment, how do we do this? Finally, what happens when people do not agree?

PLAIN LANGUAGE TRANSLATION

Town Hall Discussion with Nancy Hansen

Shifting Perspectives Valuing Non-Conformist Minds and Bodies:
Care is Care

Changing ideas about people with disabilities

One of the problems for people with disabilities in the area of health is the idea that disability is confused with being unhealthy. Another problem is the assumption that people with disabilities do not have a good quality of life. This can lead to the assumption that people with disabilities are less worthy to live.

Doctors play a big part in the lives of people with disabilities because often a doctor’s letter is needed to receive certain programs and benefits. Yet doctors may not know very much about disability. This can mean that doctors might have negative assumptions about disability and people with disabilities, which can affect their care.

PLAIN LANGUAGE TRANSLATION

Town Hall Session with Heidi Janz

The problem with doctors making decisions about whether to give end of life treatments

I want to talk to you today about an idea called "minimum goal of treatment." This idea means that before doctors decide to give a patient end of life treatments, they have to make sure that the patient will recover enough to make the treatment worthwhile.
Usually, when doctors think about these kinds of decisions, they also think about something called "quality of life". Quality of life means someone is deciding how good or how bad a patient’s life and health is or how good or bad a patient’s life and health might be if they get treatments. This can be a big problem for people with disabilities. Many people without disabilities, including doctors, do not think that people with disabilities have good lives. So they don’t think it is as important to give end of life treatments to people with disabilities.

I think that a better way to think about end of life treatment decisions is to use a "disability ethics" point of view. This idea stresses the importance of looking at patients with disabilities in new ways- not as worthless but as worth taking the time and effort to treat. It means understanding that some people with disabilities need help sometimes, including equipment to eat, breathe and live. But needing this help and equipment does not mean these people have a bad quality of life.

I think the most important thing to remember in this discussion is that doctors and other people without disabilities assume things about the lives of people with disabilities that are wrong to assume. It is unfair and unjust to treat patients with disabilities differently than patients without disabilities when deciding whether or not to give treatments. This is why I think doctors need to look differently at the question of giving patients with disabilities end of life treatments. 

PLAIN LANGUAGE TRANSLATION

Town Hall Session with Dean Richert

Today, I will be talking about two issues that come up because of the new rules for doctors and end of life health care decisions.

The first problem I will talk about is the idea of "minimum goal of treatment." Minimum goal of treatment means that before doctors decide to give a patient end of life treatments, they have to make sure that the patient will recover enough to make the treatment worthwhile. The second problem I will talk about is whether doctors should have the final power to make these decisions.

When we discuss the topic of withholding and withdrawing of treatment, or taking away or not giving treatment, we have to understand that it involves the law. In Canada, we have a law called the Charter of Rights and Freedoms. This law is there to make sure some people do not discriminate against other people. Discriminating is acting in a way that is not fair or just. When we look at minimum goal of treatment and the final power of the doctor, we always have to remember that in Canada we must treat all people fairly and equally.

I believe that the rule of using the minimum goal of treatment is unfair. When a doctor decides whether or not a treatment is worthwhile, he or she is not just making a medical decision. The doctor is also making some judgments about the patient and what his or her life is like. But I think it is more important to think about what is best for the patient.
This rule of whether or not a treatment is worthwhile also discriminates against patients who might not be able to meet the rule because of a disability or other kind of condition. It then becomes impossible for these patients to get this kind of health care treatment.

When making health care treatment decisions, doctors must make sure they do not break the Canadian equality laws like the Charter of Rights. This is why I believe it is important for a patient to be able to go to court if he or she disagrees with a doctor’s decision. The patient can argue in front of a judge that a doctor’s decision to take away treatment or not to give treatment is unfair.

PLAIN LANGUAGE TRANSLATION

Afternoon Session with Mike Harlos

Reflection: "The Path of Least Regret"

As we have seen today, decisions about health care can be very hard to make. There are many issues to think about. These issues have a big impact on patients. It is important for doctors, nurses and other people who provide health care to help patients and families understand the different choices they might have. Doctors and nurses have a lot of knowledge about health care. But patients and families also have a lot of knowledge about themselves that doctors and nurses might not have. We must remember that patients, families, doctors and nurses all have important information to share when making health care decisions.