In July, I wrote about the importance of end-of-life planning (EOL). Shortly after, I read a study that examined physicians’ EOL plans with advanced cancer and Alzheimer’s disease (stage unspecified). The study encompassed nations with different forms of aid in dying, from the U.S., where a terminal coma is the only option most states allow, to Belgium, where physician-assisted dying (PAD) and euthanasia are available. Although the term suicide has been used for PAD, it is incorrect, as no one who chooses these options desires to die; they just want a choice in how and when they do so.
A terminal coma is a form of palliation for those whose pain cannot otherwise be controlled. Once a patient is placed in a coma, they remain there until they pass. With euthanasia, a physician administers a lethal injection that suppresses respiration; the patient falls asleep, then stops breathing.
PAD is available in several states and in other nations. In these instances, the physician provides a prescription for an oral medication, like an opiate, which the patient has to self-administer. Having this control appears to be sufficient for the majority of patients who choose this option, as approximately 80 percent never use it, instead letting the disease take its course. It is inequitable for disabled people and those whose disease has sufficiently advanced that they cannot self-administer, however.
One would assume, as the researchers did, that physicians would utilize all available medical technology. However, they found that end-of-life choices were nuanced decisions. The majority of doctors eschewed technology for the options discussed above. For cancer, only 0.5 percent chose to have CPR, and for Alzheimer’s disease, only 0.2 percent. The percentage for mechanical ventilation was under 1 percent, and for tube feeding was 3 percent and 4 percent, respectively. It was not specified whether the feeding tube was a nasal-gastric one inserted through the nose and down the throat, or a PEG tube surgically placed through the abdomen into the stomach. The type of tube could have been influential, as the PEG is more invasive and more likely to become infected.
These doctors chose euthanasia, which, as noted, meant having a lethal dose of a medication to suppress breathing administered by over 50 percent for both conditions as a good to very good option. Similarly, PAD was considered a good to very good option by over 50 percent for both conditions. Palliative sedation in this study was considered an option without uncontrollable pain. Fifty-nine percent of the doctors chose it for cancer, and 50 percent for Alzheimer’s disease.
Several factors, internal and external, influenced decision-making. External factors included state legislation and regulations, general society beliefs, and professional beliefs where clinicians worked, the number of terminal patients they encountered, and their medical specialty. These were shaped through educational and religious institutions, parents, and other significant adults, and contributed to the development of inner values, including personal religiosity, secular moral principles, personality, and beliefs formed through life and professional experiences.
In the U.S., the general ethical belief is that medicine should aim to cure or, at a minimum, prolong life. Other nations do not necessarily have the same belief. In the present study, neither a doctor’s sex nor age was influential.
The authors raised several ethical concerns, primarily regarding patient-provider interactions, the information provided to patients, and the maintenance of patient autonomy. One point was that patients will often ask physicians what choice they would make given a specific diagnosis, and the influence doctors have as experts on the extent to which their personal beliefs influenced their responses to this question. Also, whether physicians’ beliefs affected the information they provided to patients in general, and whether they could separate their personal and professional personas, and if not, did this represent undue influence?
Other research has concluded that physicians provided biased information that reflected their own preferences, which influenced patient choices. From this, the authors suggested that discussing EOL planning with a patient should occur in an illness’s earliest stages to minimize coercive pressure that can occur with later discussion. I used to do disease counseling and had no difficulty providing balanced information. Patients, however, may not be ready to discuss EOL planning until later in the disease process. It may be useful to preface this discussion with “My choice is based on factors relevant to me, and your choice must be based on factors relevant to you.”
Modern medical care, unfortunately, does not provide sufficient time for physicians and patients to have the lengthy conversations necessary to develop meaningful plans. Medicare allows for a single session, which is insufficient, and I cannot speak for the different non-Medicare policies.
Similarly, having EOL conversations with family while one is healthy or in a disease’s early stage was recommended to reduce family coercion and support individual autonomy. Early discussions will still have coercive elements, as family members generally perceive maintaining life as long as possible, to allow them to love the dying person longer, as the only option. They cannot visualize the dying process through the patients’ perspective and how their views can be based on their wants rather than the patient’s needs.
M. Bennet Broner is a medical ethicist.
