Articulate the benefits of allowing eligible patients to die at home
Identify the other caregivers and providers who should be included in the decision-making, transport, and extubation processes
Describe the transport process and contingency plans if something goes wrong
Understand what interventions are allowed and available after extubation
Recognizing a patient who needs ventilatory support, correctly placing an endotracheal tube, and transporting the patient to the hospital is classic prehospital care. In this article we present a case of exactly the opposite: transporting a patient home and removing an endotracheal tube to allow them to die. This CE article reflects a case report published in the Journal of Pain and Symptom Management this year in which EMS providers and an EMS physician worked to ensure a patient’s last wishes were upheld. This is an unusual but important opportunity for EMS to impact a patient and a family.
Ms. Smith is an 80-year-old female with metastatic lung cancer. When she was well she had discussed her end-of-life wishes with her family and healthcare team. She was clear that were she to need resuscitative care, she did not want chest compressions and would prefer to allow a natural death, but if her problem was just breathing, she would like to have a trial of noninvasive positive-pressure ventilation and intubation. Ultimately her goal was to die in her home surrounded by family and friends and not in a hospital or ICU.
Ms. Smith recently developed a pneumonia that led to acute respiratory failure and septic shock. Her mental status worsened, and she was intubated. After a prolonged period in the ICU, her mental status improved, but she was still unable to be weaned from the ventilator and remained intubated. Given her metastatic lung cancer and respiratory failure, it was deemed Ms. Smith would not likely make a meaningful recovery. The critical care team contacted palliative care.
The palliative and critical care teams met with the family, including Ms. Smith’s healthcare proxy, and discussed Ms. Smith’s wishes for this situation. Everyone agreed she would not want to stay on a ventilator. Everyone agreed Ms. Smith desired to die at home. The family understood she may die right away or after a period of time after being extubated. They then discussed the situation with her; while Ms. Smith was intubated, she could still nod or shake her head to questions and squeeze the hands of her family. Her eyes lit up when the team discussed bringing her home. She clearly understood that she would probably die when the tube was removed, and she rapidly nodded her head yes.
The social workers and discharge planning team at the hospital coordinated hospice care at home. They ensured there would be supplemental oxygen for comfort and a suction device. The hospice team made sure there would be medications to maintain Ms. Smith’s comfort, including atropine drops in case she had a lot of secretions and oral morphine if she developed air hunger. The local EMS medical director coordinated with the patient’s family and healthcare team to facilitate the transport home and extubation.
A paramedic, EMT, and the medical director arrived at the hospital. Ms. Smith remained intubated and mildly sedated for comfort while on the ventilator. They transferred her to the ambulance and brought her to the house. The crew brought her in and transferred her to her own bed. A hospice nurse was present at the bedside, as were family and friends. Once the patient was settled in, the paramedic deflated the endotracheal tube cuff and extubated her. Ms. Smith was placed on supplemental oxygen, and secretions were suctioned. The family thanked the crew, and the crew left. Ms. Smith lived three more days at home and died surrounded by her family and friends in her own bed.
Most patients desire to end their lives at home, surrounded by family and friends. For many home is a place where patient’s roots, memories, and beliefs are based. Being able to die in this environment allows for a more peaceful and comfortable transition. Additionally, familiar surroundings are more comforting to both patients and family members and allow the transition from life to death to be a more positive and relaxed experience.
Some patients at the ends of their lives may be endotracheally intubated to allow for respiratory support. For some this only means their lives are prolonged. When patients are terminally ill—meaning there are no feasible options for further treatment—terminal extubation is the option to cease artificial life support.
Terminal extubation may not sound pleasant, and yes, terminal can have a negative connotation to it. Understand that terminal extubation is not physician-assisted suicide—it is allowing a patient to die without being connected to a machine, not intentionally causing death. Terminal extubation is for the patient who is terminally ill, has no further hope or treatment, and no longer wishes to be intubated and dependent on ventilatory life support.
Understand also that for terminal extubation to take place at home, significant coordination of care between multidisciplinary teams must take place. All parties involved—both patient and family, along with the healthcare team—must thoroughly evaluate the situation and ultimate goals of care. This multidisciplinary team will likely include members representing critical care, palliative care, hospice, psychiatry, respiratory therapy, social work, discharge planning, spiritual and/or chaplain services, and emergency medical services. It involves many steps, including determining eligibility of the terminal illness, palliative and hospice care services, and psychiatric evaluation of the alert patient. Both the patient and family will require extensive sessions covering what to expect both before and after extubation.
Informed consent and good communication are critical parts of terminal extubation at home, as once the patient is extubated, they will not be reintubated. However, they may be placed on supplementary oxygen and receive other comfort measures. At this point both the patient, if alert, and family need to understand what could happen. Some patients may have no respiratory distress and last for days, weeks, or months with supplemental oxygen. Others might immediately have extreme respiratory distress and seem extremely uncomfortable. This is something all sides—the patient, the EMS team performing the extubation, the family witnessing the extubation, and the hospice team treating the extubated patient—will need to consider. The bedside team must be ready to address symptoms causing distress.
Transporting patients to be extubated at home requires careful planning. These patients will need portable ventilators. Try to find out if there will be enough room for the team and a family member to accompany the patient. Also consider the layout of the destination beforehand. Knowing possible obstacles, such as stairs, can help make the transport smoother.
During transport patients may experience pain or anxiety. Ideally a plan should be in place with the medications and doses that work best for the patient. The most common medications given in palliative care are morphine, midazolam, and haloperidol. Since sometimes patients may not have good IV access, most of the medications can be given subcutaneously, or even by mouth or through a feeding tube. Keep in mind that some medications may have unintended hemodynamic consequences.
Along those lines, it is important to know what the plan is if the patient’s clinical status deteriorates or the patient loses pulses en route. While there may be no acute intervention to be performed, these are contingencies to discuss before transport. Where do you take the patient if they die on the way home?
After dropping the patient off at the house, this not a “pull the tube out and run” situation. The multidisciplinary planning and team approach must continue through this part of the patient’s experience.
Family should have hospice nurses available to receive the patient and continue care after extubation. After extubation, having a home oxygen setup is necessary if the patient is to stay on supplemental oxygen. A suction device is useful in dealing with secretions. Finally, family may like some spiritual services. The team should consider these things ahead of time.
The hardest part for all may be the subsequent emotional challenges after the tube is removed. Family members and friends have different levels of preparedness for this process and may present with various grief reactions. Also, it would not be unusual for an EMS professional to struggle with feelings of guilt despite rationally knowing extubation is in the patient’s best interests. Remember, this is new—this is not what EMS providers usually do.
Terminal extubation and other end-of-life care at home is a reality. The idea is something healthcare teams should incorporate into discussions with patients about their wishes and goals of care, as we aim to allow people to die with dignity and respect.
Paramedics have the skill to intubate and are trained to secure airways from their first day. With minimal didactic training, we can teach them the opposite and train them to perform some basic palliative care. But we must remember the impact of these actions is not a simple one, and we must prepare the EMS provider to understand their own responses to this important and life-altering task.
Ultimately the paramedic performing terminal extubation is still doing something heroic in the eyes of the patient and their family by granting them their final wishes. Terminal extubation at home is a unique service EMS is qualified to perform with the support of an appropriate multidisciplinary team.
Clemency BM, Grimm KT, Lauer SL, et al. Transport home and terminal extubation by emergency medical services. J Pain Symptom Manage, 2019 Mar 21, epub ahead of print.
Ghabeljoo J. End of Life Care Practices for Patients Who Die in Intensive Care Units (ICU). SJSU ScholarWorks, https://scholarworks.sjsu.edu/etd_doctoral/66/.
Emanuel EJ, Onwuteaka-Philipsen BD, Urwin JW, Cohen J. Attitudes and Practices of Euthanasia and Physician-Assisted Suicide in the United States, Canada, and Europe. JAMA, 2016 Jul 5; 316(1): 79–90.
Masman AD, van Dijk M, Tibboel D, Baar FP, Mathot RA. Medication use during end-of-life care in a palliative care centre. Int J Clin Pharm, 2015 Oct; 37(5): 767–75.
Danielle Scheafer, DO, is an emergency physician and EMS fellow at the University of Buffalo.
Renoj Varughese, MD, is an emergency physician and EMS fellow at the University of Buffalo.
Michael Dailey, MD, FACEP, FAEMS, is a member of the EMS World editorial advisory board and chief of prehospital medicine and professor of emergency medicine at Albany Medical College.
Brian Clemency, DO, MBA, FACEP, FAEMS, is is an EMS medical director, EMS fellowship director and an associate professor of emergency medicine at the University at Buffalo.