When someone you love is terminally ill and on life support, the decision to remove them from a ventilator is a difficult one. Most patients are on a ventilator because they have difficulty breathing, and families are very fearful that removing life support will cause their loved one to experience discomfort—or worse, to gasp for air. The truth is that if the ventilator withdrawal is managed well, the patient should not experience any of those.
Sarah Giron, the Crossroads of Cincinnati Hospice Hospital Liaison states, “Transitioning a patient home to prepare for a vent withdrawal is a process accomplished only by teamwork.”
She shares that the process requires extreme attention to detail and it requires everyone involved to be understanding of the delicate procedure. There are a lot of moving parts involved in this process, including medications, spiritual care and, of course, ventilator support. Being able to review expectations as a group before to the patient’s arrival smoothly expedites the process and minimizes anxiety, not only for the patient, but also for their family.
Patients on a ventilator typically have lost the ability to breathe on their own. Sometimes this is the result of a longstanding illness; other times it is the result of an acute traumatic event. A patient may or may not be awake and aware that they are on life support. If a patient is at the point that the physician feels that there is not a cure for their illness, or that the patient has lost the ability to function without a ventilator, or that there is no brain activity, hospice care is often given as an option for care. The removal of the ventilator by qualified staff will allow the patient to die peacefully.
Crossroads Hospice has a well-established Ventilator Withdrawal Program to assist families who are making these difficult decisions. Trained clinicians, including physicians, nurse practitioners, nurses, social workers, chaplains and respiratory therapists are available before, during and after the process. Crossroads Hospice allows the removal of life support in the place of the patient/family’s choice, including the patient’s home, a nursing home or a hospital. Collaboration with the attending physician is done early in the process. Medications and equipment are placed prior to the withdrawal to ensure that the patients comfort is maintained at all times. Early bereavement support is also available if needed.
Dee Mitchell, Crossroads Hospice of Philadelphia sums up the experience families have if the ventilator withdrawal is done the Crossroads way: “I think the most positive thing to be said about the recent facility withdrawal was that the family felt very supported.”
Dee explains that the the team—RN case manager, team leader, social worker and chaplain—met with the family to discuss the vent withdrawal process. They offered to have the meeting in the patient’s room since she was awake and aware enough to let her wishes be known, which was a great comfort to the family. On the day of vent withdrawal, the patient’s family—including her husband and children— gathered with the team members, a bereavement coordinator and the facility master social worker and a registered nurse to begin the process. The family held hands, hugged, looked at pictures, talked and cried. The patient died a little over an hour after extubation.
Removal of life support is a delicate decision, not to be entered into lightly. If you have a loved one or a patient needing support for an end-stage diagnosis requiring ventilator withdrawal, please contact Crossroads Hospice today.