When a patient is in the Intensive Care Unit (ICU), many people are involved in making decisions about that person’s care. Doctors, nurses and other healthcare workers make choices about how to care for patients throughout every day. The healthcare professionals see patients with conditions similar to those of your loved one regularly. The people caring for your friend or family member have the tools to help your loved one. You should talk with them regularly about the goals of care and decisions such as surgery, tests, breathing help, and medications.
The time may come when the treatments are no longer benefiting the patient, or the burden of the treatment is greater than its benefit. Then decisions regarding continuing or withholding life-sustaining therapies should be made jointly with the patient when possible (or via the advance directives he or she has provided). When this information is not available, family members, loved ones, and the physicians and other members of the ICU team who are caring for your loved one may need to make decisions in the place of the patient.
Kinds of decisions
Many decisions must be made for patients in the ICU. For example, if your loved one has an infection while receiving life-prolonging therapy, the decision to start antibiotics, and which antibiotics to use, will likely be made by the physician. If he or she has a heart condition, the decisions about what medicines to use will also be made by the physician. In these cases, the physician will generally explain what medicines the team will be using, and why they chose these particular medications. If it is unclear which medication would be best, the doctor will try to involve you in the decision.
Some decisions are less clear. Your loved one may have a condition that could benefit from surgery. If the operation is clearly necessary, the team will tell you so. Sometimes, an operation may help but could possibly cause more harm than good. Making a choice about an operation may be difficult. These types of decisions are best made jointly among you and the members of the healthcare team.
At times, families and ICU teams need to make decisions that are very difficult. When patients are on life support, the goal is to help your loved one get better. Life support replaces or supports a failing bodily function. In treatable or curable conditions, life support is used temporarily until the body can resume normal functioning. But, in situations where a cure is not possible, life support may prolong suffering. If life support is causing pain or prolonging the dying process without offering benefit, decisions must be made about continuing it. The ICU team always puts a priority on the comfort of their patients. Sometimes, medical machines used to keep patients alive can cause discomfort in spite of the best attempts to lessen suffering.
Palliative, or comfort, care is a comprehensive approach to treating the symptoms of illness. Comfort care focuses on the physical, psychological, and spiritual needs of patients during their illness. The goal is to provide the best quality of life available by relieving suffering, controlling pain, and providing as much independence for the patient as possible. Respect for the patient’s culture, beliefs, and values is an essential component. The healthcare team continually focuses on patient comfort, whether the goals of treatment are prolonging life or providing comfort at the end of life.
Sometimes, modern medicine cannot provide a cure. Even in terminal illnesses, however, every effort will be made to treat pain and discomfort. The ICU team has the skills and technical resources to provide a comfortable death that is not painful or lonely. Team members provide both physical and psychological support for your loved one. They are there to help support you too.
The decision to transition from life-saving efforts to comfort care is among the most difficult decisions in life. Usually, the patient in the ICU is unable to participate in the decision-making process, leaving agonizing decisions to family members and loved ones. If the patient has not said who can make decisions for him or her, states and countries have a legal system for decision making within the family; but agreement among family members is the goal of the ICU clinicians whenever possible. The family members should never feel alone in this situation. The ICU team members are there to contribute their experience, knowledge, comfort, and compassion as they share in the decision making.
How to communicate with the ICU team
Most ICUs will have a regular means of communicating with the family. Anyone can initiate a conversation with the physician regarding patient care including end-of-life issues. Critical illness demands clear and frequent communication. A common way to share information needed for decision making is during family conferences attended by selected family members and the ICU team members. Physicians welcome family members’ involvement and will make time for discussions. Physicians and other members of the healthcare team can provide technical knowledge and experience, help family members understand the situation, explain pain management, and describe expectations for your loved one’s condition and care.
The nursing staff has close knowledge of your loved one’s status and the treatments being provided. They can arrange for a family conference with the physician and other team members at your request. They can also provide access to other people with whom you may wish to confer such as social workers, chaplains, or other experts. The team can help identify and address family needs related to visiting time with the patient, alternative approaches to care, gathering other opinions, and resolving conflict among family members.
Questions you may want to ask
In an effort to make the right decision for your loved one, you will undoubtedly have many questions. The physicians, nurses, social workers, and other ICU team members can help address questions such as:
What are reasonable goals of care for my loved one?
Will this treatment cause pain?
What are the risks of a specific operation, treatment or test?
How does my loved one’s condition usually progress?
If we decide to withdraw life support, how will my loved one be kept free from pain?
What is the dying process like? How will my loved one act?
What can family members do to comfort him or her?
If this were your loved one, what would you recommend?
My loved one has communicated specifically about end-of-life care. How can I be certain his or her wishes are met?
My loved one has talked about organ donation. What can I do to honor those wishes?
Finding comfort in your decision
The decisions you make are among the most private and difficult moments in life. While you may feel alone, the ICU team is there to share in the decision-making process and help you and your loved one every step of the way.
While advance directives can help honor patient’s wishes, they may not resolve conflict. Too often, a patient arrives in the ICU without warning. Frequently, patients have never thought about, or discussed with their loved ones, their desires for the kind of care they prefer. Some individuals want very aggressive care, regardless of the outcome. In contrast, others feel that their life loses meaning if they are unable to recognize or communicate with their family members and friends. If they are unable to care for themselves, they would decline life prolonging measures. Open communication about patient’s wishes before ICU admission is ideal, but not always possible. Identification of someone who knows the kind of person the patient is and the quality of life he or she would want can help everyone in the decision-making process. Knowing that you have honored the patient’s beliefs and have acted based on them will help provide comfort.
It is important for all of us that we feel we have done everything we can for our loved ones when they are facing death. Close communication with ICU caregivers can help to make this process more comfortable. Family members need not feel they bear the burden of decision making. Sometimes family members haven’t discussed the issue of critical illness, and sometimes the patient’s medical condition is so complex that only ICU team members who have seen similar situations can assess the likelihood of survival and likelihood of suffering. In many cultures the responsibility for decisions rests with the medical team. This is an acceptable alternative for anyone facing these difficult decisions. Allowing the medical team to make decisions with input from the family may be the most compassionate and appropriate approach.
The ICU team can lessen your concerns about pain, provide support, and honor the integrity of the patient and the role of the family. They can help you understand that all appropriate care was provided to help save the patient’s life, and when that was not possible, to provide a pain-free, safe transition to a peaceful death.
Publication Date: 2005
Page Last Reviewed: July 28, 2011
Reviewed By: Jonathan D. Feldman, MD