A KevinMD article about Jimmy Carter’s end-of-life care decision, “The heartbreaking story of Jimmy Carter: a call for Medicare reform in end-of-life care,” indicated that the former president’s decision was heartbreaking. However, I have a different view. In my opinion, the 39th president, at age 98, made an autonomous and well-informed decision.
On February 18, The Carter Center announced in a statement that “after a series of short hospital stays, former U.S. President Jimmy Carter decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention. He has the full support of his family and his medical team.”
In the March 29, 1984 issue of USA Today, I stated that “often there is an obscure point in the continuum of intensive treatment when it is death, not life, that is being prolonged. We must remember that pneumonia, once described as the old man’s friend, has died. Thus it is even more important that patients be allowed to remain the beneficiaries of modern technology, not its victims.”
In the Spring 1994 issue of Stanford Medicine, I wrote that “with distressing frequency, we’re doing too little for patients and too much to them. Real caring often means choosing not to perform invasive diagnostic and therapeutic procedures that extend the dying process instead of improving life.” When a patient in the ICU or on a medical surgical unit is unlikely to survive to be discharged, studies have confirmed that a DNAR order, along with a focus on comfort measures emphasizing pain and symptom management, not only extends a patient’s remaining days but also improves the quality of his or her life during this period.
A column co-authored with internist Lawrence Schneiderman and former chair of the ethics committee at the University of California, San Diego Medical Center, published in the May/June 2007 issue of the Hastings Center Report, was titled “Physicians Should Not Always Pursue a Good ‘Clinical’ Outcome.” Although good clinical and patient outcomes are usually aligned, this is not always the case. Predictably, cardiologists are proud of helping the patient maintain a strong cardiac output, nephrologists want to make sure the patient’s kidney function is adequate, and pulmonologists properly concentrate on lung capacity and viability. However, if the patient has metastatic cancer with no likelihood of survival, timely referral for hospice services should be the priority. Under these circumstances, death should not be viewed as a medical failure. Conversely, causing or allowing a bad death represents an ethical failure.
An article co-authored with Douglas Van Houten, assistant chief nursing officer, Washington Hospital, Fremont, CA, appeared in the January/February 2014 issue of Health Progress. It was titled “When the ICU Is Not the Answer.” We identified ten recurring issues that characterized many cases when we conducted ethics rounds. For example, one such issue was “Staff members are concerned and uncomfortable when asked to provide treatment they feel is not in the patient’s best interest, and they experience moral distress in providing what they consider painful and inappropriate treatment.” Consequently, 12 guidelines were recommended based on preventive ethics to reduce the number and magnitude of issues potentially compromising patients, families, and staff members. The first guideline was “As early as possible after a patient’s ICU admission, assuming the patient is unable to express his or her preference (and has prepared no advance directive regarding such preferences and a designated surrogate), family members or friends should be asked for information about the patient’s values, goals, and any previously stated treatment preferences. Potential treatment goals are identified by the patient’s principal attending physician in light of this information, and expectations are clarified.”
Unfortunately, patients near the end-of-life are often referred for hospice services and palliative care belatedly. Instead of lamenting President Carter’s decision to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention, the author should have endorsed and applauded this decision.
Overall, it is important for health care providers to recognize the limitations of medical interventions and respect patients’ autonomy in making end-of-life decisions. As health care professionals, it is our duty to provide patients with all the information they need to make informed decisions and support them in their choices. Hospice care and palliative care can provide patients with a more comfortable and dignified end-of-life experience, and we should strive to ensure that these options are available to all patients who need them.
Paul B. Hofmann is a health care consultant.
