Medical Care Decisions Prior to Death

February 26, 2019 | by the National Care Planning Council

No one in this country dies from old age. In the mid-1950s, "old-age" was discontinued as a cause of death on all US death certificates. The assumption was that old age itself was not a disease but contributed to life-threatening disorders that were the ultimate reason for death. The chart below shows the major causes of death for Americans. About 53% of those deaths are due to cancer or heart disease. But note also the high incidence due to chronic lung diseases, accidents and stroke.

Medical Care Prior to Death

In the first half of the 20th century most people who died had an accident or contracted a disease or had a physical disorder that quickly lead to death. Life-saving medical interventions such as sophisticated resuscitation, complicated surgeries, ventilators, feeding tubes and other life-support were rarely used or even available. Nowadays there is great emphasis on curing medical problems sometimes to the exclusion of recognizing that death might be a more welcome outcome.

Surveys indicate that older people are often more afraid of death than younger people. But for all Americans, young and old, there is a great fear of death and oftentimes family or those who are sick will go to great lengths to try procedures that may be ineffective in prolonging life. We need only look to the Terri Schiavo case many years ago – where even the United States Congress got involved – as a reflection of the attitude of many Americans who are unwilling to let loved ones pass on. Estimates are that about 30% of all Medicare reimbursements are spent on people in the last year of their life. It is a fact that much of this medical care did little to prevent death and prolong life.

According to the Dartmouth Atlas study on death:

"The quality of medical intervention is often more a matter of the quality of caring than the quality of curing, and never more so than when life nears its end. Yet medicine's focus is disproportionately on curing, or at least on the ability to keep patients alive with life-support systems and other medical interventions. This ability to intervene at the end of life has raised a host of medical and ethical issues for patients, physicians, and policy makers…

The question, then, is which is better? From the dying person's perspective, more is not necessarily a good thing - more visits to doctors for someone who is very sick can be stressful and exhausting. For many people a hospitalized death is something to be avoided if at all possible. From the perspective of the health care system, much of the care being given is futile, and accomplishes little. People who live in areas with very high utilization of hospital resources do not live longer than people who die in areas where utilization is lower - and if extension of life is not the goal of intervention, what is? From society's perspective, the cost of this kind of intervention is high, futile, and takes resources away from places where the money might be spent far more productively."

Deciding How and When to Stop Curing and Start Caring

Some people are content to leave decisions regarding their death in the hands of others. By doing so, they expose themselves to unnecessary and futile treatments as outlined above. They may experience numerous visits to the emergency room in the last stages of their life. And their dependency on others often results in great stress to family members when they lose their capacity and didn't make their last wishes known. Families are often forced to make decisions about life-support and treatment without knowing whether their loved one would have wanted these interventions.

Medical providers have come up against this situation many times and as a result there are written guidelines for doctors dealing with end-of-life issues. Here is a listing of official positions taken by the American Medical Association on a number of end-of-life actions.

Do-Not-Resuscitate Orders
Efforts should be made to resuscitate patients who suffer cardiac or respiratory arrest except when circumstances indicate that cardiopulmonary resuscitation (CPR) would be inappropriate or not in accord with the desires or best interests of the patient...

Futile Care
Physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients. Patients should not be given treatments simply because they demand them. Denial of treatment should be justified by reliance on openly stated ethical principles and acceptable standards of care, as defined in Opinion 2.03, "Allocation of Limited Medical Resources," and Opinion 2.095, "The Provision of Adequate Health Care," not on the concept of "futility," which cannot be meaningfully defined.

Medical Futility in End-of-Life Care
When further intervention to prolong the life of a patient becomes futile, physicians have an obligation to shift the intent of care toward comfort and closure. However, there are necessary value judgments involved in coming to the assessment of futility. These judgments must give consideration to patient or proxy assessments of worthwhile outcome. They should also take into account the physician or other provider's perception of intent in treatment, which should not be to prolong the dying process without benefit to the patient or to others with legitimate interests. They may also take into account community and institutional standards, which in turn may have used physiological or functional outcome measures.

Quality of Life
In the making of decisions for the treatment of seriously disabled newborns or of other persons who are severely disabled by injury or illness, the primary consideration should be what is best for the individual patient and not the avoidance of a burden to the family or to society. Quality of life, as defined by the patient's interests and values, is a factor to be considered in determining what is best for the individual...

Withholding or Withdrawing Life-Sustaining Medical Treatment
The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the preferences of the patient should prevail. The principle of patient autonomy requires that physicians respect the decision to forego life-sustaining treatment of a patient who possesses decision-making capacity. Life-sustaining treatment is any treatment that serves to prolong life without reversing the underlying medical condition. Life-sustaining treatment may include, but is not limited to, mechanical ventilation, renal dialysis, chemotherapy, antibiotics, and artificial nutrition and hydration...

Optimal Use of Orders-Not-To-Intervene and Advance Directives
More rigorous efforts in advance care planning are required in order to tailor end-of-life care to the preferences of patients so that they can experience a satisfactory last chapter in their lives. There is need for better availability and tracking of advance directives, and more uniform adoption of form documents that can be honored in all states of the United States …. Surrogate Decision Making Competent adults may formulate, in advance, preferences regarding a course of treatment in the event that injury or illness causes severe impairment or loss of decision-making capacity. These preferences should be followed by the health care team out of respect for patient autonomy. Patients may establish an advance directive by documenting their treatment preferences and goals or by designating a proxy to make health care decisions on their behalf...

A careful reading of the foregoing procedural positions from the AMA leaves a clear impression that health-care providers are looking for input from their patients or the patient's surrogates in treatment relating to end-of-life. Too often the patient or family simply let the system go into automatic mode and they do not assert their rights. It is extremely important for the medical community to know beforehand what the wishes of a person are concerning his or her medical treatment.