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Editor’s Note:[1]
This column presents a problematic case—one that poses a medical-ethical dilemma for patients, families, and healthcare professionals. As this case is based on a real medical situation, identifying features and facts have been altered in this scenario to preserve anonymity and to conform to professional medical standards. In this case, the family is forced to honor the patient’s request to terminate life-sustaining medical care.
Question: Is it ethically permissible for this young man to stop his ventilator so he will die?
David is a 34-year-old man who has been on a ventilator for 9 years. He was re-admitted to the hospital two weeks ago for treatment of recurrent pneumonia and has improved. He asked yesterday if his ventilator could be stopped.
Nine years ago, he sustained a neck fracture in a diving accident that left him quadriplegic and ventilator dependent. He went to a rehabilitation facility where his family learned to care for his medical needs, and he was discharged home on ventilator care. His pulmonary situation was stable for several years. He was able to be off his ventilator for several hours at a time and go out in his van with friends. However, in the past two years he has had ten hospital admissions for atelectasis[2] or infection. His secretions have increased so that he requires suctioning several times through the night, and he is no longer able to be off the ventilator for even short periods. He has had vigorous treatment with antibiotics, chest physical therapy and repeated bronchoscopies, and it is the consensus of his care team that his pulmonary situation will not improve and will likely steadily deteriorate.
He has had excellent care from his mother and sister with help from home nursing 12 hours per day. He has a voice activated computer which facilitates many personal tasks. He has been very involved in his care, and his nurses describe him as thoughtful, intelligent and self-assured. Prior to his illness he attended college (history major) and enjoyed classical music. He has several supportive friends who visit him regularly.
His parents divorced a few years after his accident. His father and only brother live out of state. The patient states that his sister has “put her life on hold” to assist with his care, and for this he feels grateful, but not guilty.
He has been thinking for the past eight months that he wanted to stop supportive treatment so that he could die, but articulated this to his family and care team just yesterday.
On examination he is alert, articulate, and in no apparent respiratory distress. He is able to speak a few words at a time using a speaking valve. He says that his life as a “quad” was tolerable until two years ago, but the progressive pulmonary disease has made it intolerable as it is. He would continue treatment for another nine years if he was able to be as he was prior to the progressive pulmonary deterioration. He is now frightened of suffocating and wants to avoid that. He would take an overdose of a sedative and ask someone to disconnect his ventilator, but he recognizes that this is not permissible, and wants to work with his team to find the best comfort care possible as his disease takes his life. He reports that he is not depressed, though he knows what it is like to feel that way as he was despondent for several weeks after his accident.
I talked with the patient, his mother, best friend, primary hospital nurse, and one of his home care nurses.
Discussion:
It is generally felt that there is no moral obligation to continue life that is dependent on technology when the burdens to the patient of that life outweigh the benefits to the patient. It is also the legal and moral consensus that the healthcare team should pursue the treatment goals of the competent patient. Thus, even if he were not terminally ill from progressive pulmonary disease, it would be ethically permissible for him to choose to discontinue his antibiotics and ventilator if he felt the burdens of continued treatment were disproportionate to the benefits of continued life. His progressive pulmonary disease and terminal prognosis are further reasons that make it reasonable to change treatment goals from life-prolongation to comfort care.
It is not acceptable either legally or from a professional ethics standpoint for any member of his care team to assist him with an act of suicide. It is, however, ethically permissible to give him adequate sedation to ease his respiratory distress as long as the intent and the doses are not aimed at hastening death.
Recommendations:
It is ethically permissible to honor this patient’s request to discontinue his ventilator. Before this is done, however, all efforts should be made to ensure that his distress and fears have been addressed and that he then be given the option of continuation of ventilator support.
It is also ethically permissible to give him sedation prior to discontinuation of his ventilator as long as the doses used are for sedation only, and are not intended to hasten his death.
Follow-Up:
After further discussion with his professional care-givers, he went home on prophylactic antibiotics to prevent recurrent pneumonia. This worked for the next six months during which David felt he had an acceptable quality of life. When at that time he did develop another life-threatening infection, he remained at home. He had a brief celebration of his life with family and friends. His long-standing pulmonary physician went to his home, gave him a small dose of sedation and removed his ventilator. He died peacefully in about 3 hours, having received 3 additional doses of sedation when he showed signs of mild respiratory distress.
Comment:
In hearing about this case, some express concern that this represents euthanasia. However, the patient died of his inability to breathe without mechanical assistance. He and his caregivers had successfully treated that inability for nearly 10 years, but when the patient found continued efforts inadequate, he chose to discontinue treatment, allowing the disease to take his life. His doctor did not give him anything to cause his death; he stopped therapeutic efforts to prevent death when they were no longer wanted by the patient.
Additional Resources:
- Hastings Center. Guidelines on Termination of Life-Sustaining Treatment and the Care of the Dying. Briarcliff Manor, NY: Hastings Center, 1987.
- President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Research. Deciding to Forego Life-Sustaining Treatment. Washington, DC: US Government Printing Office, 1983 (https://repository.library.georgetown.edu/bitstream/handle/10822/559344/deciding_to_forego_tx.pdf?sequence=1).
References
[1] The article, as originally published, was untitled, and is reprinted by permission of the publisher. Robert Orr, Medical Ethics and the Faith Factor: A Handbook for Clergy and Health-Care Professionals (Grand Rapids, MI: Eerdmans, 2009), 108–11.
[2]Atelectasis is the collapse of a portion of the lung, usually caused by obstruction or compression of small airways.
Cite as: Robert D. Orr and Ferdinand D. Yates, Jr., “Daring to Discontinue Life-Sustaining Treatment,” Ethics & Medicine 37, no. 1 (2021): 15–17.
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