Medical Care Immediately Prior to Death
In the first half of the 20th century, most people who died had an accident or contracted a disease or they had a physical disorder that inevitably lead to death. Life-saving medical interventions such as sophisticated resuscitation, complicated surgeries, life-saving treatments, 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 the families of those loved ones, who are near the end-of-life, will go to great lengths to try interventions that may be ineffective in prolonging life. We need only look to the Terri Schiavo case as a reflection of the attitude of many Americans who are unwilling to let loved ones pass on. Estimates are that about 30% of 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 Dartmouth Atlas project uncovered some startling differences in what happens to Americans during their last six months of life. In some parts of the country, nearly 50% of people are in the hospital at the time of death, rather than at home or in a nursing home or other non-hospital setting. In these areas, the likelihood of being admitted to an intensive care unit during the last six months of life is also higher than average - as is the likelihood of being admitted to an intensive care unit during the hospitalization at the time of death. In other parts of the country, the likelihood of a hospitalized death is far smaller, and people who are dying are much less likely to spend time in hospitals during their last six months of life.
The Atlas asked why this was so - why someone living in Miami was so much more likely to receive a great deal of high-tech, expensive medical services, while someone with the same condition who lived in Minneapolis received so much less. The answer appears to be that the capacity of the local health care system - the per-capita supply of hospital beds, doctors, and other forms of medical resources - has a dominating influence on what happens to people who are near death. Those who live in areas like Miami , where there are very high per capita supplies of hospital beds, specialists, and other resources, have one kind of end of life experience. Those who live in areas like Minneapolis or San Francisco , where acute care hospital resources are much more scarce, have very different kinds of deaths.
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 may 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 loved ones at the end-of-life 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 the titles of official positions taken by the American Medical Association on a number of end-of-life actions. The actual content can be found online on the AMA website.
Medical Futility in End-of-Life Care
Quality of Life
Withholding or Withdrawing Life-Sustaining Medical Treatment
Optimal Use of Orders - Not-To-Intervene and Advance Directives
Surrogate Decision Making
One of the most important ways for a person to express his or her intent for the end-of-life is through an advance directive. Advance directives for medical treatment ordinarily involve the four following written documents.
- Living will
- Health care treatment plan
- Health care power of attorney
- Do not resuscitate at-home (for states that allow a legal procedure for this action)
We will go into greater detail on these forms in a future article but will mention here some important points to consider with these documents.
- Many if not all healthcare organizations have standard forms for living wills. Some providers may also allow for signing a do-not-resuscitate order. Some of these documents may not be what they claim to be. Read them carefully.
- A health care treatment plan is usually created between a patient's physician, the patient and an attorney. This is a detailed agreement on how to handle certain medical interventions.
- A health care power of attorney is a legal document that would not usually be available as a standard form from a health care provider. This document should supersede any other guidelines that physicians use for making medical treatment decisions.
- The do-not-resuscitate-at-home arrangement is a very complicated procedure where a person needing emergency medical treatment in the home and not desiring resuscitation makes that wish known to emergency medical personnel. This involves an identification bracelet, a complicated verification procedure and an OK from a central clearinghouse not to perform any life-saving actions.
A patient or his or her spouse or a family member will typically call 911 in the event of a life-threatening emergency. Very seldom will the living will, the health care treatment plan or the health care power of attorney end up with anyone in the emergency room. Medical decisions for someone who cannot make those intentions known, generally devolve to family members who show up at the hospital. The actual health treatment wishes of the patient may be at home in the desk drawer. It is therefore extremely important to remember to take these documents to the emergency room whenever a crisis arises.
Without the advance directives in hand for an emergency room or for a hospital admission, many patients or family will be given the opportunity to sign a standard form from the health care provider. Many hospitals, nursing homes and home health agencies provide forms that allow or disallow a number of treatments. It is extremely important for the patient or the family to read these institutional advance directives thoroughly before signing. Some of these documents, claiming to be a living will, are in fact not, but are other types of advance directives that may not fit the needs of the family.
More detailed information about this subject and about other issues dealing with long term care planning can be found at www.longtermcarelink.net.
We will discuss in more detail, specific issues dealing with end-of-life, in future articles.