By Steven Reichert, MD, Director, Palliative Care
A 60-year-old man presents to the emergency room via ambulance with complaints of severe shortness of breath and malaise. He has a history of bipolar illness, severe COPD and morbid obesity. Upon arrival he is found in respiratory distress and is soon placed on artificial life support and stabilized.
Chest x-rays and CT scans demonstrate severe pneumonia and he is transferred to the MICU. Here, his condition worsens and he is diagnosed with acute respiratory distress syndrome (ARDS). Although stable, he is unable to be weaned from life support due to his acute illness on top of his chronic conditions. His long-term prognosis is potentially grim and his only chance of survival would most likely necessitate performing a tracheostomy and eventual transfer to a nursing home for long-term care. The patient does not have the capacity to make decisions due to delirium and he lacks a designated health care proxy. He lives alone in New York, and his only family are his brothers and sisters who live in the Midwest and are somewhat estranged.
His sister from Iowa is able to provide the hospital with a copy of the patient’s living will, completed in 1989 when he was living in Iowa. The document states that “if the patient should have an incurable or irreversible condition that would cause his death within a relatively short time that his life not be prolonged by administration of life sustaining procedures.” The document goes on to state that “if his condition is terminal and he is unable to participate in decisions regarding his treatment, that procedures which prolong the dying process should be withheld.”
The ICU team and pulmonary specialist cannot state whether or not the condition is irreversible. They fear that if he is not able to improve shortly, a tracheostomy would give him more time to potentially heal. However, ARDS can take weeks to month to improve and some patients are never able to live without life support. The condition can be terminal; however, at this point, only time will tell.
They ask the family if they wish to proceed with a tracheostomy.
Several documents can assist families and health care workers in making medical decisions for patients who lack the capacity to do so. A Health Care Proxy (HCP) Form is completed by a patient and empowers the designee with all medical decision making in the event that the patient has lost capacity to make choices. The form varies state by state. The HCP form in New York is a simple form which requires only the signatures of the patient and two witnesses. A doctor, lawyer or notary is not necessary to complete a HCP form. When completed by the patient, a copy should be placed in their medical record and, equally importantly, a copy should be given to the proxy for safe keeping. While often times a family member, the HCP can be anyone the patient selects – with the exception of a person who is providing direct health care (i.e., the patient’s doctor, nurse or home health aide).
A MOLST form (medical orders for life sustaining care) sometimes called POLST (provider orders for life sustaining care) is also a helpful document in directing medical decisions in the event of life-threatening illness in a patient without medical decision-making capacity. While they differ from state to state, the MOLST has not only a section to delegate a HCP, but also specific instructions regarding CPR, ventilators, artificial feeding and the use of other life-sustaining treatments. MOLST forms are completed by the patient with their doctor, but do not require a notary or a lawyer.
A living will is another document which assists with medical decision making. Again, varied from state to state, a living will normally addresses a person’s end-of-life wishes and uses language similar to the living will provided by this patient. Living wills often require a notary’s review and at times the use of an attorney.
Unfortunately, at times these documents, while helpful, do not provide sufficient information to allow a family member or a physician to make decisions regarding de-escalation of medical care. Interpreting the words “irreversible” or “incurable” can be challenging. Determining the prognosis of some conditions such as ARDS can be challenging. Those with strong religious beliefs might feel that with prayer, all things are possible. Other conditions’ prognosis may change as new treatments become available. HIV/AIDS has transformed from a rapidly fatal illness to a manageable long-term condition over the past two decades and many forms of cancer once untreatable are now very treatable and potentially curable.
None of the documents can predict the nuances of life and sickness. For that reason, they should be completed along with a conversation between the patient and their family and HCP. Resources such as www.theconversationproject.org can assist patients in discussing their own personal values and preferences regarding end-of-life care. While it is a conversation few wish to have, it is often necessary as a piece of paper cannot fully express the needs and desires of a patient.
The ICU and Palliative Care team conduct a series of conversations with the patient’s siblings. Several decisions are made including a DNR order and a decision to remove life support and not perform a tracheostomy. After 10 days on life support the patient is extubated and a DNR order is placed. Although tenuous in the first several days, the patient slowly and somewhat surprisingly regains his capacity and eventually is stable for discharge home. Prior to discharge the Palliative Care team reviews the patient’s end-of-life wishes and HCP. The patient states that he would not have wanted a tracheostomy but would want resuscitation in the future, so the DNR order is revoked. He assigns his eldest brother as his HCP and is encouraged to maintain contact with him especially if his wishes or health change.