Ethics: Terms
The principle of autonomy, or self-determination, entails respecting the choices and wishes of persons who have the capacity to decide and protecting those who lack this capacity. This principle would be used when a physician who has discussed preferences about life-sustaining treatment with a woman who has just been diagnosed with metastatic breast cancer is then guided by those wishes.
The principle of beneficence advises physicians to benefit patients and protect their interests, whereas the principle of nonmaleficence encompasses the oft-quoted phrase, "Above all, do no harm." Physicians must balance the risks and benefits of any proposed treatment. An example of beneficence would include a physician who refuses to provide a prophylactic mastectomy for a patient who fears cancer but does not have any unusual risk factor for the disease.
The principle of justice entails providing persons with that to which they are entitled and treating similar cases similarly. Together, the principles comprise the foundation of ethical principalism, the dominant approach in bioethics today.
The ethical foundation on informed consent can be traced to the promotion of two values: personal well-being and self-determination. To ensure that these values are respected and enhanced, patients who have the capacity to decide their care must be permitted to do so voluntarily and must be provided all relevant information regarding their condition and alternative treatments, including possible benefits, risks, costs, other consequences and significant uncertainties surrounding any of this information.
Informed consent is a two-art process involving disclosure by the health care professional and a decision by the patient. If health care professionals support a patient's right to make informed choices, they must respect the patient's decision regarding whether to accept or decline treatment. The consent form provides written documentation of the patient's decision but it is not a substitute for a thorough discussion between their physician and the patient.
Three elements of informed consent must be considered. These elements include (1) the information to be discussed, including the nature of the intervention described in sufficient detail, (2) the patient's comprehension, (3) the patient's decisional capacity and (4) the voluntary nature of the decision. The physician should carefully discuss the proposed purpose of the intervention, including how any knowledge gained from the procedure will change the treatment course or outcome. The likely risks of the proposed intervention must be fully disclosed together with a discussion of their severity and likelihood. The likely benefits of the proposed intervention should be explained.
Life-sustaining treatment may include but is not limited to a mechanical ventilator, renal dialysis, chemotherapy, antibiotic thereapy and artificial nutrition or hydration. Physicians, ethicists and lawyers widely agree that withdrawing or withholding life-sustaining treatment is legally and ethically permissible under appropriate circumstances. In fact, ethical and legal principles require that physicians respect the decision to forego life-sustaining treatment by a patient who has decisional capacity. However, if a physician is morally opposed to the patient's treatment preferences, the physician may transfer care to another physician who is more comfortable with the patient's wishes.
In addition, a competent patient may make his wishes known in advance of losing the ability to make health care decisions, such as a living will. In such cases, physicians are morally and legally required to follow these health care preferences to the extent permissible by law.
Situations in which a patients underlying diagnosis or diagnoses impart a terminal or poor prognosis thus rendering specific medical interventions unhelpful and possibly detrimental.
Cardiopulmonary Resuscitation (CPR) in Older Persons
The indications for CPR have changed considerably since its inception in 1960. Initially a treatment for sudden death in the setting of an acute myocardial infarction, CPR has become a procedure utilized in death from any cause. In the absence of a Do Not Resuscitate (DNR) order, CPR is often done by default, despite a growing body of literature that indicates CPR is often ineffective, particularly in persons dying of non-cardiac, multi-system diseases.Several studies have evaluated the efficacy of CPR in older persons. In frail older persons who are dependent in their activities of daily living, CPR is usually not effective. Less than 2% of patients living in nursing facilities who receive resuscitation survive. Those who do survive are often more debilitated than before the cardiac arrest. The outcomes of older adults in the community who have a cardiac arrest are equally poor.
Functionally, active older persons with primarily cardiac disease, who suffer a witnessed arrest in the hospital, may fare better. Hospitalized older patients suffering cardiac arrest have a survival rate of 26%. Some patients are more functionally dependent after the arrest. When people begin to develop functional disability and accrue chronic illnesses, their survival drops precipitously, regardless of age.
Artificial Feeding Near the End of Life
Food is an essential requirement of life and without it death is certain. The symbolic nature of food is very powerful and firmly rooted in our culture and religious beliefs. As such, the decision to not provide food is often a difficult one.The delivery of food through artificial means is a medical therapy. It may be instituted, withdrawn or refused like any other medical treatment. However, a person must declare clearly that they do not want artificial feedings. This statement can be as simple as: "If I were to become so ill that I could not talk meaningfully with my family and the hope of me regaining that ability was small, I would not want artificial feeding." It is useful to have statements like this included in the Health Care Proxy form (HCP), or to state in the form that your health care agent knows your wishes regarding artificial feeding. If a person feels strongly that they would always want to have artificial feeding, they should make sure their health care agent knows their wishes (and if they have a HCP they should note this on the form).
Much of the information about what happens to people when they decide to forego artificial feeding comes from the hospice and oncology literature. People working in hospice have noted that their patients suffer very little because of not eating. Dying patients who choose not to have foods delivered by artificial means, do not suffer from hunger and thirst. Patients that do experience hunger and thirst, can have their symptoms relieved with mouth care, and small amounts of food and fluids that they chose to eat.
Studies in the oncology literature have shown that cancer patients have a higher mortality and morbidity who when they receive aggressive artificial feeding, in comparison to those that do not. In patients with strokes who are fed with gastrostomy tubes, the median time of survival is only 53 days (range 2 - 528 days), with only 12% of the patients surviving for more than three months. No study has shown that dying patients live longer or are more comfortable as a result of artificial feeding. Enteral tube feedings are not without side effects. One of these side effects is aspiration pneumonia, which occurs in 50% of patients. When feeding tubes are used in patients with confusion or dementia, self extubation is common and often results in the use of restraints.
Some rules of thumb to consider:
- Dying patients should choose what they want to eat, when they want to eat and the amounts of food that they want to eat.
- For some patients, the act of eating is still important even though they may eat only very small amounts of the food presented to them.
- Almost all dietary restrictions should be lifted in older adults especially for dying persons.
- Food should be fed but never forced.
- Education of family and caregivers concerning artificial feeding is very important.
- Food should never be withheld from a dying patient who desires it.
- Artificial feeding has substantial risks, especially aspiration and self-extubation, that often results in the use of restraints.
- To date, no studies have demonstrated that artificial feeding improves morbidity or mortality in dying patients.
- None of the predominant religions in the USA demand that artificial feeding be administered to dying patients. All are firm however, that food never be withheld from a patient who wants it, or with the intent to cause pain or death.
- Severe anorexia and loss of thirst is often part of the dying process, no matter what the cause. Organ function slows and metabolic processes shut down.