Mr. B. is a 58-year-old man with COPD who presents to the ER with increasing swelling and pain in his legs associated with shortness of breath. In the emergency room he is noted to have increasing shortness of breath and restlessness.
Treatments for COPD and CHF are administered, but his respiratory status deteriorates rapidly. The patient, who is fully alert and oriented, tells the doctors that he is DNR and does not want to be on a machine. He becomes increasingly combative and hostile requiring physical restraints. He is told he will die without intubation; he does not change his advanced directive. His sister, contacted via telephone, states that she does not know her brother’s end of life wishes, but requests that everything be done to keep him alive. He is sedated, intubated and sent to the ICU.
Later that shift, Mrs. G., a 98-year-old woman with profound dementia, severe cachexia, and frailty presents via ambulance from a nursing home. She is laboring to breathe, is frail and cachectic. Records from the nursing home reflect that she is bed bound, nonverbal and fed via PEG tube. Chest x-ray shows a large lung mass with diffuse metastatic illness throughout all lung fields. The nursing home transfer form identifies the patient as full code and lists a health care proxy; however, the nursing home cannot be reached via telephone. The ER physician debates not intubating the patient given her dismal baseline functional status and newly diagnosed metastatic lung cancer.
Perhaps no conversation is more difficult than the discussion regarding end of life wishes. Patients and families are often reluctant to discuss death and are often unaware of the need to appoint a health care proxy. Although recent changes in Medicare reimbursement now allow physicians to bill for end of life discussions, doctors are challenged finding the time and lack the ability to facilitate these difficult conversations. In the Bronx, where social support and family structure is often fractured, it is not uncommon to find a patient who not only has no advanced directive, but has no family or friends who could serve as a proxy or surrogate decision maker. Unfortunately, many end of life decisions are made in times of crisis where emotions are high, time is short and discussion is not possible.
These cases illustrate the conflicts between patients’ rights [upholding patient autonomy, right to self-determination and the need to preserve life] and doctor’s decisions [the role of paternalism and the directive to first do no harm].
In the first case, it would seem apparent that intubation of this patient would be inappropriate as he states “he is DNR.” However, he is a relatively young man who would more likely than not have his life saved with temporary invasive ventilation. He is noted to be fully alert and oriented, but how much does he really understand about being DNR? His family, unaware of his wishes, caught off guard and unable to speak with their brother, understandably requests “everything be done.” Intubation would appear to be a violation of the patient’s right to self-determination.
However, this violation of his autonomy is certainly influenced by the opinion of the physician who feels that intubation would be only a temporary sacrifice and would be lifesaving with only temporary discomfort for the patient.
How do we handle the second case? An advanced directive is clearly noted on the nursing home transfer sheet and the health care proxy cannot be reached. However, given the patient’s condition and horrific x-ray, intubation will prolong life, but will likely result in no clinical improvement and, in the opinion of many, will only prolong suffering. Is there a role for paternalism in this case? Can the ED staff act with paternalism here and “do no harm” by not intubating and allowing a natural death? Is it appropriate to violate patient’s right to life under the principles of beneficence (first do no harm)?
Mr. B is successfully extubated after 36 hours of ventilator support. He vividly recalls the events in the ED and remains angry at being intubated against his will even though he is alive. He does not feel that intubation was necessary to save his life. A family meeting is held with his sister who is appointed his health care proxy. The patient clarifies his wishes stating that he is no longer DNR, and would allow intubation, but would not want prolonged artificial life support if there was no hope he could live without a machine. Surprisingly, he does not express gratitude towards the ED doctor.
Mrs. G is intubated and sent to the MICU. Her health care proxy is reached the next day and after discussion regarding the patient’s prognosis, the decision is made to transfer the patient to the hospice unit the following day. Family gathers and the ventilator is stopped the next day. She peacefully dies two days later in the presence of family. The family is grateful they had the time to be with the patient when she dies.
By Steven Reichert, MD, Division Director, Palliative Care
Dr. Steven Reichert