Managing The Intensive Care Unit (ICU) Experience: A Proactive Guide for Patients and Families

Medical Decision-Making & Establishing Goals of Care

Medical Decision-Making & Establishing Goals of Care

Medical Decision-Making

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Many patients who are admitted to the ICU cannot make decisions for themselves because of how seriously ill they are. In these situations, family members or close friends often become involved in helping make decisions for patients. In some cases, patients have made their medical wishes known in legal documents called living wills or advance directives. Patients may have even appointed a Durable Power of Attorney (DPOA) for healthcare, an individual who has been assigned the legal responsibility of making medical decisions on their behalf if they are unable to make decisions. Often, however, patients and their families have not discussed their preferences for medical care.

When your loved one is in the ICU, think about his or her values. What is important to them and what do they value most about life? This can include the activities they enjoy and things they find meaningful in life. For example, some patients prioritize their independence.

Second, think about your own emotions. Try to separate what you want for your loved one and what your loved one might want for themselves. The choices your loved one might make may not be the same as the choices you would make for yourself. Your job is to help the ICU team understand the choices your loved one would make if they were able to communicate.

Finally, think about what you expect to happen to your loved one. Ask the medical team what their expectations are too. If your expectations are different, be prepared to discuss with the team why this might be.

If a patient has not made their preferences for medical care known, some states have laws about who can make medical decisions on the patient’s behalf. Other states expect families to come together and come to an agreement about who will participate in making medical decisions. These decisions can include whether to undergo medical procedures or to use life support machines. In order to help families make the best decision possible, the medical team may arrange a family meeting to inform and update those who are making the medical decisions.

Expect the following questions from the medical team during a family meeting:

“What is your understanding of what is happening with your loved one?”

“If your loved one could talk to us, what would they say about the current situation?”

“What is your understanding of what the future may be for your loved one?”

These questions help make sure everyone has the same understanding of what is happening.

It is important to remember during these meetings and while making medical decisions that the goal is to let the medical team know what the patient would tell us if they were able to communicate their values and preferences for care. Additionally, it is helpful to the medical team for the family to appoint one family member who can be the spokesperson and point of contact, so that the medical team knows who to notify first if the patient’s status changes. It may also be beneficial for the family to ask the medical team if the team can give recommendations on what procedures and treatments to pursue.

We recommend asking the following questions during a family meeting:

“What can we expect to happen to my loved one, both during and after this ICU stay?”

“What are the ‘best case’ and ‘worst case’ scenarios that we should be thinking about?”

“What are signs that we should be looking for if my loved one is getting better? What are signs that my loved one is getting worse?”

“Please explain the treatment choices that would be reasonable to consider for my loved one.”

Medical Decision-Making Terms

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There are some important terms that families may hear when discussing medical decision-making. Here is a brief list:

Advance directive: Refers to any number of legal documents that specify a patient’s wishes in the event that they are unable to make decisions for themselves. Includes living wills and durable power of attorney for healthcare.

Living will: One form of an advance directive. A binding legal document that outlines a patient’s wishes in the event of specific medical events. It is only used when a patient is unable to make their own decisions. It can cover a variety of topics, including resuscitation, being on the ventilator, dialysis, artificial nutrition, and organ donation. It may be very limited or very broad in scope.

Durable power of attorney (DPOA) for healthcare: Also referred to as a power of attorney for healthcare or healthcare proxy. A legal document that appoints an individual to make medical decisions on the patient’s behalf if they are unable to make these decisions independently. A patient must appoint their own DPOA for healthcare; family members or friends cannot be granted this power by the medical team. Of note, a DPOA for healthcare is distinct from a durable power of attorney for finances, which authorizes a person to make financial decisions on your behalf.

Physician Orders for Life-Sustaining Treatment (POLST): A set of medical orders that outline a patient’s wishes. The name of this form varies by state. It is completed by a patient and their physician and kept with the patient so as to be readily accessible in the event of a medical emergency.

Full code order: This is the default option for all patients who are admitted to the hospital unless otherwise stated. This means that all life-prolonging and life-sustaining measures including CPR will be performed unless specifically declined by the patient or their medical decision-maker.

Do-not-resuscitate (DNR) or Do-not-attempt-resuscitation (DNAR) order: This is a medical order that indicates that the patient does not want CPR to be performed in the event that they have cardiac arrest. This does not influence the other therapies that are offered to the patient.

Do-not-intubate (DNI) order: This is a medical order that indicates that a patient does not want to be supported with a ventilator (discussed in the “Respiratory Failure” section below) under any circumstances. This does not influence the other therapies that are offered to the patient.

Establishing Goals of Care

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We recommend you ask the following questions:

“How realistic are my hopes for my loved one?”

“How will this treatment help my loved one achieve their goals of returning to independence, of being less breathless, of improving their strength, of being comfortable, etc.?”

Throughout your loved one’s stay in the ICU, it is important to be mindful of the overall goal of the care they are receiving. While the hope is to return the patient to their prior level of independence, it is important to frequently reassess the potential of achieving this goal. A patient’s condition can change throughout their hospitalization, and a goal that seems realistic early on may not be later. With your loved one’s values and goals of care in mind, you and the medical team can make the best decisions about the care your loved one receives.

Although advances in medicine have improved survival for critically ill patients, there are many patients who will not recover and will die in the ICU. When the medical team feels that a patient is very unlikely to achieve their goals of care or survive their illness, the team may recommend discontinuation of certain life-sustaining interventions, like the ventilator. In these cases, they may consult a team who specializes in care at the end of life. These providers are referred to as Palliative Care specialists, and their team may include physicians, advanced practice providers, nurses, social workers or chaplains.

This Intensive Care Unit (ICU) guide for patients and families is intended to provide general information about adult ICUs. The guide is for informational purposes only and is not a substitute for the advice or counsel of one’s personal healthcare provider.