Your Own Sweet Time: Discontinuing Ventilator Support at Home

Hospital Course and Changing Goals of Care

Despite antibiotic treatment, the MICU team was not able to wean CC's ventilator settings. She became tachypneic each time she was placed on a pressure support trial.

When it became clear that weaning CC from the ventilator was going to be a challenge, goals of care discussions were initiated between the ICU team, palliative consult team, and CC's family. The family initially considered placing CC in a ventilator facility (LTAC), to continue attempts at weaning her off the ventilator.

Her grandparents, however, expressed their reservations about sending CC to an LTAC; in their words, she would be “taken away from them” and they would rather have her at home with them. The family then brought up the possibility of disconnecting CC from the ventilator, to “see how she does” and “whatever happens, happens.”

The family understood that she would die, likely within hours to days if she was disconnected from the ventilator. However, they strongly believed that CC would not be happy anywhere else but home, even if her survival would be short.

They were also concerned that she might not survive the 35-mile drive home if the ventilator was disconnected in the hospital. They requested that the ventilator be disconnected only after CC had returned home, where she had spent most of her life.

The Process of Home Extubation

After much discussion it was decided to arrange for this process—something that our home hospice had not done previously. To explain what the entire process would look like, we met with the family in the hospital before transporting CC home.

The hospice RN and I arrived at CC's home before the ambulance arrived. We were struck by how beautifully her hospital-equipped room was decorated. The toys, the family photos that adorned the walls, and her framed certificate declaring her “Student of the Month,” drew our attention amidst the hospital bed and suctioning apparatus.

CC's extended family had gathered in the home, awaiting her arrival. When the ambulance arrived, she was wheeled into the living room on the stretcher, still attached to the ventilator. The corridor to her room was narrow and the paramedics had difficulty maneuvering the stretcher and transport ventilator to the room. Her older brother initially asked if he could carry her to her room. When he repeated his request, CC's mom quietly told us that he had always carried CC around the house if needed and asked if we could let him perform this task one last time. We felt gently chastised as we let him carry his sister (with paramedics carrying the transport ventilator) to her room.

Once she was settled into her bed, her family members took turns saying goodbyes. The whole family then entered the room and various prayers were said. While the family was sad, their prayers were uplifting. Amidst their sadness was also the celebration that CC would no longer suffer and would be safe in the hands of their Lord.

Some family members chose to remain in the room as we began the process of discontinuing the ventilator. Small boluses of morphine were given until her respiratory rate was in the low teens. A dose of lorazepam was also administered, as she appeared agitated. CC was then disconnected from the ventilator.

As time passed, more family members entered the room. Some were initially uncomfortable and unsure of what to do. Two of her nieces (ages two and five and a half years) entered, bringing a sense of everyday normalcy as they giggled and laughed. The two-year-old was constantly saying, “CC, I love you.” Her father lifted her up, and she kissed CC on the cheek. Their laughter and love replaced fear and discomfort; the family relaxed in their presence.

For the next two hours we continued to give intermittent comfort medications and spent time with the family. CC appeared comfortable, and her family became more talkative, sharing a variety of “CC stories” with us. It was clear that during her short life she had brought them a tremendous amount of joy. Their love for her was palpable.

When it became apparent that she might live for a few more hours, we switched from intravenous to oral medications. Her family was willing to learn how to administer the concentrated oral morphine and oral lorazepam solutions, so they could continue caring for her to the very end, as they had done for the past 29 years.

The family knew they could call the 24/7 hospice hot-line if they had any questions. We also made arrangements for a day nurse to visit if CC was still alive in the morning.

As we said our goodbyes, CC's family remarked on how comfortable she looked. A few hours later, CC died in her own room with her family at her side.

Home Ventilator Discontinuation—Lessons Learned

Most adult terminal extubations occur in the hospital, mostly in the ICU setting. Occasionally, families request that this be done in the home setting.

In CC's case, it was our privilege as her hospice team to be able to orchestrate this. For her family, it also offered them the opportunity for a final and profound act of caregiving. In the words of her 30-year-old brother, “I've helped take care of her since I was five; I declined scholarships that would have taken me away from home, because I was needed here to help with my sister. I do not see that as a sacrifice.” And her 31-year-old sister: “Caring for her all these years has not been difficult. It has been as natural as breathing. She has been so much fun.”

“The Vigil” by Carol Kinsey

This case occurred when I was a fellow and it touched us greatly. Our hospice nurse penned this poem in remembrance of CC.