By Andrew J. McCormick, MSW, PhD
|How to Approach Making Decisions in the Intensive Care Unit|
|Get Good Information|
|Some Things That Can Make Decisions More Difficult|
|Some Things That Help Make Decisions Easier|
|How Can a Social Worker Help?|
For many people, having a family member in the intensive care unit (ICU) can be very difficult. The experience raises concerns about dying and can cause a lot of stress. Throughout the ICU stay, many decisions regarding the patient’s care may have to be made. Often the decisions must be made while dealing with both the shock of seeing a loved one attached to high tech medical equipment and experiencing a range of emotions including loss and fear. This article offers suggestions for preparing to meet with medical staff members to help individuals and family members make the best decisions they can.
One should always understand questions that may need to be answered. There are sometimes critical decisions to be made in today’s intensive care unit. Here are a few questions that family members might expect from the ICU staff:
- Did your family member ever talk to you about how much medical care they would want in a situation like this?
- How much should we use artificial life support such as a ventilator (respirator) or feeding tube?
- Should we change the treatment to palliative care to make your family member comfortable and let them die naturally? (Palliative care or comfort care is treatment that reduces pain and other symptoms rather than providing a cure.)
Information is vital to good decision-making. Many people are reluctant to ask doctors questions, but those who do get more information. Get support from other family members or your social worker to get your questions answered. Here are some suggested questions:
- What are the immediate goals of the treatment you are proposing?
- What is the long-term outcome of the treatment?
- What has been your experience in this situation with other patients?
- What kind of care is palliative care?
- What is your recommendation?
Also, other family members should be involved. Some family members have a legal authority to make decisions and other family and some friends should be involved because it would be important to the patient. For example,
- If the patient has a guardian or has signed a durable power of attorney, that person must be part of the decision. (A durable power of attorney is a legal document that enables an individual to designate another person to act on his/her behalf, even in the event the individual becomes disabled or incapacitated.)
- If the spouse, children and brothers and sisters are available, they are other essential decision makers.
- If the patient has important friends including life partners to whom they are not married, they should also be consulted.
- A Highly Emotional State. The most common feelings of family members of patients in the ICU are sadness, grief, anger, and disbelief. All of these feelings are expected but some people respond more strongly than others. If some family members are having a very difficult time coping they may benefit from talking to the social worker. Most ICU staff members can direct someone to the right place where they can get some help.
- Denial. The shock of the events that brought your family member to the ICU can be so great that some people are not able to take it in. They may deny the seriousness of the situation and not want to participate in decision making. It is common for some other family members to become impatient with someone in denial, but this condition is not in the person’s control. They may need more time to make their own peace with the situation and cope at their own pace.
- Religious Convictions. For some people it may be obvious to rely on firm religious convictions to determine how much recovery a person might be expected to attain and how much treatment to provide. However, if time passes and the patient does not improve as hoped, deciding some of the important questions outlined above can prove difficult. This is especially true if family members have different levels of faith and belief. Consultation with a religious leader of your faith or the hospital spiritual care staff may be very helpful in sorting out these differences.
- Focus on the Patient. Keep in mind that the patient is the most important person. This is the key in making the best decision in the ICU. Some families may have a hard time talking to one another because of past history or differences of opinion about what is best. Keeping the patient in the ICU as the main focus of the treatment decision will lead to the best outcome, even if it is not exactly what each family member might want.
- Respect the Family. Respect every family member’s personal response to the situation. Different people in the same family can respond differently to the same trauma. Simply agreeing that these differences exist and are important will make it a little easier to talk to each other about what is best.
- Hear Each Other Out. A very important part of making decisions in a stressful situation is to listen to everyone’s opinion. When everyone can feel part of the process agreement often happens very naturally. When most people know that what they have to say matters, they are more likely to meet others in a compromise. Some families may find themselves in agreement very quickly. Others will take more time to reach a mutual understanding. In some cases, consensus is never achieved.
- Arranging a Meeting With the Medical Team. Communication with the medical team is the best way to get the information you need to make a good decision. However, in the ICU physicians can be hard to contact. Your social worker can coordinate a family conference and meet with you before the conference to help you prepare your questions.
- Providing Counseling on ICU Treatment, Palliative Care and End-of-Life Issues. Social workers are trained to provide counseling services to one or more family members and friends to discuss feelings, what the patient valued in life, and religious and spiritual needs. The social worker will provide support for the decision making process and help plan for the next steps.
- Gathering Information About Community Services. There are many options for patients and families when it is time to leave the hospital. Social workers are the hospital’s specialists in locating home health care, nursing homes, rehabilitation centers, and in some circumstances funeral homes and cremation services.
In most medical centers your social worker will be available to offer valuable assistance from the time the patient enters the hospital until discharged. Additional information is available in the hospital’s patient and family information center.