Molecular
Targeted TherapyADVOCACY
It is highly recommended that any person diagnosed with a serious illness have a Medical Advocate outside of the immediate family to help research and inform, and to interact with the doctors and monitor the ongoing process. In addition to being the patient's "mouthpiece," the Advocate must be highly studied in both the illness and in the treatment. It is essential that the Advocate understand each and every medication, including medications that are not part of the "Standard Protocol" but have shown positive results in trials. This knowledge is essential if the Advocate is to help to find a "cutting-edge" doctor, and to cut through any "baloney" that might be presented by those practitioners who simply do not possess the cutting-edge knowledge.
The Advocate must know in advance why patients tend to succumb to this illness, and what medical procedures are used to try to prevent it --- and at what point in the illness the procedures should ideally be done to be effective. The Advocate may feel the need to raise the issue of a potentially life-extending procedure long before the hospital or practitioner or specialist-being-consulted would normally consider it, (especially if extreme expense is involved).
The patient must have an Advocate in the hospital room 24/7, as medicines are constantly given at wrong dosages (regardless of facility), and the patient can frequently ring for a nurse and never have the call answered in a timely manner. Frequently i.v. lines will stop flowing and the machine will beep --- with no one to hear this.
In "Intensive Care," there are periods in which the patient may not even be monitored --- the patient's Advocate must find a way to be given permission to be allowed in the room 24/7 --- not typically allowed in Intensive Care. And just as a waiter in a restaurant knows all-too-well what really goes on inside the kitchen, there is a behind-the-scenes aspect of the Medical System as well. If you are a very ill patient struggling against the odds but using "cutting edge" treatment, it may not always be in your best interest to stay in Intensive Care longer than is absolutely essential. Doctors are less able to "fudge the rules" under the watchful eye of Intensive Care.
Also, Intensive Care is very expensive for the insurance company and, resources being limited, there could conceivably be some inherent pressure on hospital administrators not to over-spend on patients whom the insurance and hospital administration feel have the lowest odds of survival. If a patient NEEDS to be there, by all means --- it can be life saving. Just don't fall into the trap of believing that Intensive Care is a higher-form-of-care without problematic aspects unto itself. Sometimes 24-hour private care in a regular room may be a good alternative.
It is indeed true that sometimes taking extreme measures to prolong the life of a terminal patient may not be in the patient's best interest, but if administrators seem overly anxious to get the family to sign paperwork agreeing that the hospital can, at its own discretion, elect NOT to resuscitate the patient, consider whether this is truly in the current patient's best interest under the specific circumstances.
If the patient is undergoing a novel form of treatment that might, it is hoped, "beat the odds", then giving the power to anyone but the family and/or Advocate to call such decisions may not be wise. To the hospital administrators and insurance companies, each patient is a statistic. If the family and Advocate have reason to believe that the patient in question may "buck" the normal statistics, don't give away any rights.
Further, as a personal opinion: the more pressure that is placed on the family to sign off on resuscitation --- with the administrator citing that it would be "cruel and unusual" to employ extreme measures to extend the patient's life --- the more one may come to fear that this patient has worn out their welcome where they are, (financial, political or otherwise), and would be better off on a different floor in their own room with 24-hour nursing care.
To reiterate, sometimes taking extreme measures to prolong the life of a terminal patient may not be in the patient's best interest --- if one is going to keep a patient alive just a short while longer to suffer before inevitable death. But each case is unique. Sometimes there might be "cutting edge" hope that various professionals, both Oncologist and Specialists, are not adequately trained to know of. There are far too many "terminal" patients who have continued to walk around for may years because they didn't give-in to statistical pressure. And hopefully the Advocate has the wisdom to see both sides of the coin --- not an easy thing to do.
The medical system is broken; each patient must fight for themselves by having a firm and knowledgeable Advocate who will protect them.
[The opinions expressed above are strictly those of this website creator. They do not represent the opinions of anyone else.]
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