Making Informed Decisions in the ICU

The following information is being given to help with learning and knowing the details that are important to think about when making decisions for your loved one. If your loved one needs a ventilator for life support, they may get better quickly enough to come off the ventilator in the first week or so, or they may stay on the ventilator for a long period of time. Sometimes they may stay on a ventilator for the rest of their lives.

The doctor team will speak with you about treatment options, mainly within the first week of ventilation. We want you to ask questions to help make informed decisions for your loved one. Use this information when looking ahead at possible decisions you may need to make.

These possible decisions can include: (see the definitions on the third and fourth page for understanding):

• Deciding to have a tracheostomy tube placed or not

• Deciding to have a feeding tube placed into the stomach or not

• Deciding your loved ones code status (response to cardiac arrest)

• Making a decision about home care or placement in a long-term facility if long-term ventilator support is needed

• Deciding to remove ventilator support with or without the plan to reinsert a breathing tube

• Deciding to give comfort care

Meetings can be arranged with your loved one's medical team to talk about treatment options. One major fact to think about when making these decisions, is the chance that your loved one's medical situation will get better. Long-term ventilation may change the quality of a person’s life and may lead to medical problems. If you would like to talk with your loved one's treatment team, contact your Case Manager who can help with scheduling meetings.  

Remember to check whether your loved one has a living will, advance directive, or has expressed a wish not to be maintained on a ventilator. This information is very important to share with the doctor and medical team. If no wishes or directives were ever expressed by your loved one, family members will need to decide what their wishes would have been. Continued communication with the medical team will make sure understanding of your loved one's care and prognosis.

Potential Options for Care

When discussing long-term ventilator support, there are many choices to take into account. Decisions to keep ventilator support can be changed if your loved one's condition declines or if new information about an advance directives has been found. Below are some of the treatment options offered for those who may survive for long periods on a ventilator.

Tracheostomy with ventilator support

A tracheostomy is a surgical procedure that involves making an hole in the neck in order to place a tube into a person's windpipe. The tube is placed in the hole in the neck below the vocal cords. This lets air enter the lungs. A breathing machine (ventilator) then pushes air into the lungs through the tube. After meeting with the doctor, you may decide to get a tracheostomy tube placement for ongoing ventilation. A surgeon will then be consulted and a date for the procedure will be scheduled. With a completed tracheotomy, the breathing in the patient's mouth is then removed and the tracheostomy tube is connected to the ventilator. If the patient gets better, the ventilator settings will be changed to allow the patient to do more breathing on his/her own. Hopefully, the ventilator can be removed in order for the patient to breathe fully on his/her own through the tracheostomy tube. The patient may be placed back on the ventilator from time to time during the “weaning” process in order to work towards a time when the patient is breathing without the machine for longer periods of time. If your love one keeps getting better, the tracheostomy tube can be removed and the patient will breathe normally through the nose and mouth. For some patients, however, being on a ventilator is permanent, and the tracheostomy tube stays in place for the rest of one’s life.

Removal of the breathing tube and ventilator with continued medical care

If you decide not to keep the tracheostomy tube and to remove the ventilator, the ventilator can be stopped and other medical treatments continued. In this case the patient may breathe on his/her own and receive extra oxygen through a mask or nasal cannula as needed. The patient may keep getting the IV treatments such as antibiotics, other medications, and fluids, as ordered by the doctor and discussed with you. If the patient is stable, he/she will be moved to a medical floor for ongoing treatment until he/she is ready for discharge to the next appropriate care setting. If the patient is not able to breathe on their own without the ventilator, a decision must be made in advance either to give comfort care or to re-insert a breathing tube.

Comfort Care

If the patient has a living will expressing a wish not to be kept on a ventilator or to withhold or withdraw life support measure, OR the patient and/or family decides to stop such measures in the best interest of the patient, ventilator support may be withdrawn and comfort measures started. Once the machine and tube are removed, staff will provide comfort care to the patient that may include oxygen therapy, medicine for pain, shortness of breath, anxiety or agitation, and any other uncomfortable symptoms.  Family members are given the opportunity to stay at the patient’s side and take part in end-of-life care as much as they wish. When possible, the patient will be moved out of the critical care area and into a private room where family members can spend more time with the patient. Staff members are available to help patients and family members with arranging spiritual care services. Staff and doctors will keep family members updated. Palliative Care team may be consulted to help with individualized care, such as pain management.

Caring for Tracheostomy Patients

Tracheostomy Care

Tracheostomy care involves help with repositioning, coughing and deep breathing; stoma care; and management of secretions. Secretions are suctioned out of the tracheostomy tube with a suction catheter to prevent build-up and infection (pneumonia).

Weaning Process

Some patients can have their ventilator setting adjusted to breathe more on their own while others cannot. For those who can, the ventilator may one day be removed completely and the patient will breathe through the tracheostomy tube with supplemental oxygen and humidity. Those who cannot be weaned will one day be ready to leave the hospital. Discharge options may include placement in a long-term skilled nursing facility or return home with family.

Speech and communication

Patients on ventilation may feel frustration about their limited ability to communicate. After a tracheostomy tube is placed, a speaking valve can be used to help some patients with communication. Speech therapists can help patients and families to make the most useful methods for communication, including whether a speaking valve can be used.

Nutrition

Often, patients cannot eat in the usual manner while on a ventilator. Most will need liquid nutrition delivered through a tube to meet the body’s needs. At first, a flexible tube can be placed through the nose into the stomach for this purpose. This is not a long-term solution, due to the chance of problems and the chance for the tube to come out. If tube feeding needs to continue long-term, a gastrostomy tube is placed directly through the abdominal wall into the stomach. Sometimes the doctor may ask the patient and family about placing a gastrostomy tube at the same time that a tracheostomy tube is placed. In some cases patients who have a tracheostomy are able to handle a diet by mouth. Patients need to successfully complete a series of swallowing evaluations by a Speech Therapist before eating by mouth.

Beyond the Hospital

If a decision has been made to keep using the ventilator and to place a surgical tracheostomy and gastrostomy tube, then what is next?

When the patient is on a ventilator but no longer needs intensive care, the patient will be transferred to a step-down unit or to a Long-Term Acute Care Hospital (LTACH). The step-down unit has specially trained nurses who care for patients on ventilators. Because the patients are more stable, these nurses care for a higher number of patients than in the ICU but still have lower number of patients than a general floor nurse. Respiratory Therapists round regularly on ventilated patients as they do in the ICU in trying to wean patients off the ventilator.

Once the acute part of the patient’s illness is under control and the patient is stable with on the ventilator and tube feedings, the patient no longer needs to be in a short-term acute care hospital. Choosing a long-term care arrangement is the next step, and many factors need to be considered. It is the joint duty of the patient, family, doctor, and insurance company or other payer source to reach a decision about the most appropriate setting for continued care.

Potential options for long-term care

• Long-Term Acute Care Hospital (LTACH): An LTACH is an acute care hospital that specializes in caring for patients who need a longer period of time to get better. LTACHs offer specialized services such as ventilator weaning, wound care, rehabilitation, and other therapies. Currently, there is one LTACH nearby and six in North Carolina. If a patient meets medical criteria of an LTACH and payment is approved by the insurance provider, the patient will be transferred by ambulance using Critical Care staff. Your Case Manager can give more details for this potential option.

• Skilled Nursing Facilities (SNF): SNFs give care for chronically ill patients such as long-term nursing care, rehabilitation, and other services. Currently, there is a very limited amount of facilities licensed to care for patients requiring long-term ventilator support. The facilities tend to have a waiting list for ventilated patients and none can accommodate kidney dialysis in addition to the ventilator. There are similar facilities in Virginia and surrounding states and referrals can be sent there if no availability in NC.

• Home: When thinking about the option of returning home, family members need to be know that they must be willing and available to participate in caring for the patient. Ventilated patients need 24-hour (around the clock) care from family or volunteer caregivers. Home health agencies may be able to give additional coverage, based on the patient’s insurance coverage or other payer sources. Also, changes may need to be made to the home. These may include renovations to accommodate the large amount of equipment needed to safely care for a ventilated patient.

Financial Considerations

Payer Sources: Private Insurance and Medicare HMOs, Medicare, and Medicaid

All three of the long-term care choices listed above require a payer source for the services provided. Usual payer sources include private insurance, Medicare HMO, Medicare, or Medicaid. These often cover at least some of the long-term care expenses.

• Private Insurance and Medicare HMOs: Benefits for long-term care with these plans vary greatly depending on the company and the individual’s benefits package. Some insurance policies cover inpatient care at an LTACH, short-term stays in skilled nursing facilities, post-acute health care, as well as some long-term custodial care at home or an institution. However, many policies do not pay for any or all of these options. It is best to discuss your insurance plan with your Case Manager to determine your options.

• Medicare: Medicare Part A helps pay for inpatient care provided in acute care setting including LTACHs, short term stay in skilled nursing facilities, and some post-acute home health services. Medicare does not pay for custodial or long-term care services either at home or in an institution.

• Medicaid: Medicaid may pay for long-term care services in institutional, home, and community-based settings, but it does not pay for LTACHs. It is important to ask your Case Manager about this benefit early in the hospitalization. It can take some time to process a Medicaid application.

You Are Not Alone

It may feel overwhelming to read about these options and think about the decisions you may be asked to face. Please know that there are caring nurses, doctors, social workers, chaplains and other hospital staff who are here to listen and guide you through the decision-making process. If you have questions or are unsure about what is happening, or if you need clarification regarding choices/options/decisions, please ask the doctor or another staff member. Your ICU team wants to be available to answer questions and support you and your family during this difficult period of time. In addition, if you would like to meet with a chaplain, please let one of the staff know.

This informational packet was designed to help prepare you for some of the decisions you may face. Please let anyone know on the medical team if you would like additional information, assistance, or support.

Definitions

• Code Status: an order written by a doctor, in consultation with a patient and/or family member that gives instructions to hospital staff for responding to a cardiac arrest, i.e., attempt resuscitation (code blue) versus no code.

• Comfort Care: focus of patient care is aimed at relieving symptoms, enhancing the quality of life, and often easing the dying process.

• Gastrostomy Tube: a feeding tube inserted by a surgeon or gastroenterologists through the skin and stomach wall directly into the stomach.

• Living Will/Advance Directive: pre-specified instructions given by individuals stating what actions they wish to be taken in the event they are no longer able to make these decisions due to illness or incapacity.

• Long Term Acute Care Hospital (LTACH): a specialized hospital that works with ventilator, rehabilitation, wound care, and other types of patients.

• Palliative Care: aims to add to the quality of life of patients and their families who are faced with a life-threatening illness. This includes giving symptom management to prevent and treat suffering. Palliative care patients are not always at the terminal phase of sickness. It can be delivered at the same time as medical treatments. Palliative care also can help to identify the best goals of care based on the patient’s wishes and understanding their values.

• Skilled Nursing Facility (SNF): independent facility that provides services such as long-term nursing care and rehabilitation for chronically ill patients.

• Tracheostomy: also known as a stoma, a tracheostomy is an hole in the neck created by a surgeon that goes into the trachea (often referred to as the “windpipe”). A tracheostomy tube is then placed through this hole to help with breathing.

• Tracheostomy Tube: a plastic tube inserted through a tracheostomy to keep the airway open. Air moves through the tracheostomy tube into the lungs instead of going in through the nose and the mouth.

• Ventilator: sometimes called a breathing machine, the ventilator can do all or part of the breathing work for a patient who is unable to breathe adequately. If the heart stops beating, a ventilator cannot keep the patient alive.

• Weaning: doctor-or therapist-directed way of changing the ventilator settings so that a patient can do more breathing on his/her own. Once a patient is on the lowest settings, it may become possible to remove the ventilator if a patient has recovered breathing function.

• Stoma: an artificial hole made into a hollow organ, especially one on the surface of the body leading to the stomach or trachea.