End of life issues have surfaced again amidst the current political health care reform discussions. As is usual in these heated circumstances, rhetorical misconstructions are bound to appear. Such is the case with the chilling mention of "death panels" that "will pull the plug on grandma." Here's a review of the salient elements regarding the end of life.
he evolution of end of life issues and terminology, as we know them today, dates back to 1975 when Karen Ann Quinlan, a 21 years old young woman in perfect health, became comatose while under the influence of alcohol and recreational drugs. She was expected to recover but never did. She remained comatose with minimal ongoing evidence of brain electrical activity detectable only by sensitive monitors. Yet, this minimal cerebral activity kept her 'technically alive' and, as such, deserving of all treatment methods to maintain her status, later coined officially as a "persistent vegetative state" (PVS). Her parents, acting under the auspices of a legal "substituted judgement doctrine", repeatedly requestedover the course of ten yearsto have the patient removed from the ventilator to permit her to die a natural death. Repeatedly, this request was denied until 10 years later when the New Jersey Supreme Court ruled that she should be allowed to die a natural death. The ventilator was removed and the patient died a natural death. A hospice is now in the structure that kept her alive during her 10 years in a PVS state.
No sooner had we got over the Quinlan experience when another PVS case appeared on the national scene. Nancy Cruzan entered a persistent vegetative state following an auto accident. This time her case moved swiftly through the judicial system until the US Supreme Court declared, for the first time, the constitutional right to refuse medical treatments. However, the Court prescribed the requirement to show that such refusal was the expressed wish of the patient. This wish turned into a legal document is what is called today a 'living will' or more precisely advanced directives. These directives specifically express the following:
The need to secure a living will for every adult has become clear to the American public.
the wish to be allowed to die under the circumstances explained
the naming of a person to act on the patient's behalf, called an attorney for health care or health care surrogate, and
a durable power of attorney granting the power to said attorney for health care.
A special situation is that of a pregnant woman in PVS who would be excluded from the provisions of a living will while the prevailing medical opinion is that the fetus is continuing to grow and develop. After delivery all life support equipment is removed and the patient allowed to die as requested in her living will.
Following the Quinlan and Cruzan experience and their legal derivatives, both medical and legal professionals felt a sigh of relief. That comfort state did not last long. Enter Terri Schiavo and a 10 years old saga of international proportions that ensued, which we all remember. A short version goes like this.
Rescue personnel were called to attend a 27 years old female in cardiac arrest who responded to resuscitative stimulation and was found to have a low serum potassium, which could have explained her heart stoppage. She had a history of bulimia, the 'binge and purge' habit, practiced primarily by women, which could have led to the low potassium and the ensuing cardiac arrest.
It would appear as if all the hard work by the various medico-legal commissions and the well documented painstaking experiences of the families during the Quinlan and Cruzan years never left a mark in our public consciousness. During 7 of the last 15 years of Terri Schiavo's life in a persistent vegetative state, a legal battle took place in a Florida courtroom that would in time move throughout our entire judicial system, to include the US Supreme Court and US congressional hearings. The essential points of divergence rested on the following legal issues.
• Guardianship and substituted judgement: in the two previous cases there was full accord for the removalnot the continuationof their loved ones from artificial life support. In the Schiavo case, a bitter family feud ensued. The patient's parents on one side clamoring to keep her daughter supported indefinitely and the patient's husband, her court appointed guardian and decision-maker on the other side, acting on the expressed wishes of her wife during life of not keeping her artificially alive indefinitely.
• Advanced directives: Terri Schiavo did not draft a living will during her life. In the absence of written advanced directives, court testimony of a spouse, family, close friends and guardians serves the legal purpose of delivering wishes expressed during life.
In the Schiavo case there was no artificial ventilation involved, only the delivery of nutrition through a feeding gastrostomy (a tube placed surgically directly into her stomach, not via a nasogastric tube). Courts are more prone to favor removal of a ventilator than the withdrawal of artificial feeding. The former is viewed as more 'heroic' or 'extraordinary' than artificial feeding.
When the judicial order to remove her feeding tube was about to be carried out the case changed dramatically. On one side, the parents pleading in court for the life of her daughter and her transfer to their care and, on the other side, the patient's husband trying to explain the realities of US lawprecisely crafted to deal with this most unfortunate situationas they apply to her wife, all of which had been meticulously followed.
Television cameras on location outside the patient's hospice kept the world on a 24/7 repetitive stream of information. Right to life groups, individual members of religious orders and groups coming from afar accumulated as the police maintained order. Members of the international press made the case one of worldwide concern. Appearances from medical and legal experts were few, certainly not enough and repetitive enough to gain public understanding.
In an unprecedented move in US history the Schiavo case brought forth political activism from the State of Florida, the Congress of the United States and the White Houseall of which sought, through the swift drafting of new laws, to exercise jurisdiction over what the judicial system had already accomplished up to the moment. This brought about judicial reviews from State and Circuit courts all the way to the Supreme Court on four different occasions. In every instance the original rulings were upheld.
In the absence of an informed and balanced view of the case, the general public was left to respond emotionally to what was a heart-wrenching spectacle. Protestors brought food and bottled water to the hospice. Florida "hotlines" voiced the claims that Schiavo was being deprived of food and water. The words crucifixion, torture and starvation were used as well. The US congressional House majority leader called it "an act of medical terrorism". The Vatican quoted the opinion of the Pope John Paul II to the effect that food and water in a case like this are not medical issues and should, therefore, be allowed. Such a pronouncement was immediately criticized by the medical community. Indeed, everything that is done or not done to a PVS patient is a medical issue.
In reality, the opinion of medical experts is that patients in PVS most likely do not experience thirst or hunger or pain and other sensations because they lack the necessary central nervous system connections for that to occur. In effect, the credible suspicion that any of those sensations is present, if confirmed, indicates that the diagnosis of PVS has been wrongly made.
The hallmark of PVS is chronic wakefulness without awareness.
The need to secure a living will for every adult has become clear to the American public. It has also started a national debate about the rights of incapacitated people in general, and specifically how to proceed at the end of life. This is also a matter of great concern for hospitals that must continue to provide very expensive, long term artificial life support care without hope of reimbursement or a mechanism for decision-making about a final disposition.
More about PVS
Number of cases at any given time is estimated as: 10,000 to 25,000
• Causes of PVS
- trauma, severe head injury40%
- hypoxia (oxygen deprivation)40%
- miscellaneous causes (acute brain diseases, stroke, poisonings, hypoglycemia20%
• Recovery from PVS
- unheard of after several years. No documented case after 15 yrs.
- A case of PVS due to hypoxic-ischemic encephalopathy (lack of oxygen or circulation to the brain) for more than 3 months is considered permanent
Source: www.medscape.com/viewarticle/502272Medscape Medical News
Given the numbers of cases involved at any given time and the expense of sustaining a patient in a persistent PVS, it's very necessary that there should be particular attention paid to this matter so that the legislators, the public and the families be well educated in what is at stake in these unfortunate cases.
- http://en.wikipedia.org/wiki/Persistent_vegetative_state#cite_note-nejm1994-0this reference is excellent. It has a very complete bibliography of the subject and its various components, including detailed information on possible treatments.
- Rivera, R.A. Asuntos de vida o muerte. Intercambios, August 2001
- Rivera, R.A. Matters of Life and Death, The ATA Chronicle, August 2004