Withdrawing treatment

Discontinuing life support is one of the most difficult and complex decisions a family can make. It may help to go through these steps in making your decision:

1. Learn as much as you can about the medical situation and the likelihood of improvement.
2. If your loved one prepared a health care directive, then use this to guide care decisions. If the directive names someone to act as a proxy, then the proxy decides on care.
3. Imagine what your loved one would say about the situation if he or she were able.
4. Ask health care providers or a hospital ethics committee for guidance.
5. Have the health care team monitor the situation and assess, or reassess the situation.

1. The first step is to get as much information as possible from the health care team about the possibility of recovery. If recovery is possible, it’s important to understand to what degree it’s possible and what level of functioning the patient will have. Lung functioning is important, but brain functioning is usually the main consideration. If the brain is not expected to recover to the point of allowing awareness of self and surroundings, then the quality of the person’s life must be seriously examined. Quality of life is a major factor in making a decision about life support.

2. Once you have a good sense of what can be expected medically, you may find guidance in a health care directive. Ideally the patient will have prepared such a document, and it addresses this scenario and what to do. Alternatively, it names a person to act as a proxy in order to make decisions on the patient’s behalf. Unfortunately, most people have not prepared such a document, or if they have, it’s too vague to offer clear direction.

3. If there is no health care directive, or if the directive isn’t clear on this situation, then ask yourself what the patient would want. Families struggling with decision-making may find that role-playing is a way to come to a decision that feels right. First, imagine the patient is alert. Then, imagine explaining all the available options. Now, ask yourself, “What would he or she likely say?” When family members think of this, very often they’re clear what their loved one would say. It might be “I don’t want anything to prolong this condition" or, “Take me off the machine." It might be “I want all possible treatments that make sense medically.” It might be something else. If you’re confident that you know what your loved one would say, then you have the most helpful possible piece of information to guide decisions. In this case, you’re not making the decision, rather, you’re conveying the patient’s wishes.

4. If you’re not sure what the person would say, you can ask for guidance from health care providers. Some hospitals have an ethics committee that can help with these difficult issues. The ethics committee meets with the health care team and the family to discuss the situation. It then provides guidance on what decisions are ethically acceptable.

5. There may come a time when the health care team no longer considers it good health care to continue life support. Their treatment efforts may be intense, yet they see no improvement in the patient’s condition, and don’t expect improvement. If the situation reaches this point, it’s time for a reassessment and serious discussion with the health care team, the patient if possible, and family.

It can be very difficult to make decisions about feeding when people can’t eat on their own. Tube feeding is not considered a basic part of care. Health care providers, ethicists and the courts consider it to be artificial nutrition and a medical treatment. This makes it comparable to other medical treatments such as dialysis or assisted breathing.

The questions to consider when making decisions about tube feeding are similar to those for decisions about other medical treatments.

• What does the patient want?
• What are the goals of the tube feeding?
• What are the potential risks and benefits of tube feeding?
• How does faith or culture bear on the decision?

What does the patient want?

This is the most important question, and it may seem obvious, but it’s not always asked. If communication isn’t possible, other cues may signal that someone doesn’t want to be tube fed. Some people repeatedly pull out the tube, which signals that the patient disapproves of the tube feeding.

If a person doesn’t have the capacity to decide, then other information is considered. The most helpful piece of information is a health care directive, if one exists. A directive is prepared by the person at an earlier stage of an illness, and outlines what’s to be done in case that person is no longer able to make decisions. Even if such a document does exist, it may be too vague to offer clear direction. For example, it’s hard to know where tube feeding fits within "heroic measures" or "life support." In this case, it helps to imagine this person before the stroke. What would he or she say about this situation: being tube fed, dependent on others, usually bedridden, perhaps unable to communicate? When families think of this, most commonly they answer without hesitation, that the person “wouldn't want anything to prolong life beyond the natural course of the illness." If that’s the case, then tube feeding should not be given. It’s not right to continue a treatment that’s known to be against a person's wishes. If they can imagine the person saying “I want everything done that is medically acceptable” then the family must consider it. The family isn’t making the decision, it’s simply conveying the patient’s wishes.

What are the goals of the tube feeding?

Any medical treatment has particular goals. If the goals are not achievable, then the treatment should not be done. The health care team can offer information to clarify possible outcomes.

As an example, these scenarios show how decisions about tube feeding may be approached:

• A person may recover some independence.
  Tube feeding may be given to support the person during initial recovery, when outcomes may be unknown. There will come a time when it’s possible to assess further if a certain level of recovery can be reached. If it’s no longer possible to achieve a desired level of recovery, then the patient may reevaluate the use of tube feeding.
   
• A person is alert and in many ways doing well.
  Tube feeding is given to satisfy hunger and support the person while their regain the ability to eat.
   
• A person is in a coma or seriously ill, and improvement is not likely.
  Many families feel tube feeding should be started because feeding is such a fundamental part of caring for another human being, and it’s inconceivable not to start it or to stop it. Countering this is the legal and ethical view that tube feeding is not a fundamental part of human care, but instead is a medical treatment or intervention. This is when discussion may include setting specific goals and timelines for this medical treatment. It’s common to wonder if not providing tube feeding will cause the person to “starve to death.” Starvation, however, is related to hunger. Without hunger, someone doesn’t starve, but rather develops malnutrition. Malnutrition describes the physical aspect of lack of food. People in a coma or seriously ill don’t feel hunger; they don’t starve, but their nutrition is affected.

What are the potential risks and benefits of tube feeding?

Consider stopping tube feeding when the risks or burdens of the feeding are greater than possible benefit. Among the burdens of tube feeding is the possible discomfort that may be caused by the tubes. In addition, the feeds themselves may cause diarrhea, reflux, aspiration, and fluid overload. It’s crucial to evaluate how someone is tolerating the feeding. It’s always important to consider whether these create more of a burden than a benefit.

How does faith or culture bear on the decision?

Family members may want guidance from members of their cultural or faith community, to help weigh the implications of stopping feeding. Talking with community members can give you support and help you come to a decision.