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Supportive Care For the End Of Life
Ernest H. Rosenbaum, MD
Hard questions arise when one has to face decision-making and the critical phase of end of life. Great consideration is given for compassion, empathy and dignity of life. The first question asked is, How to achieve optimal dignity of life? Doctors direct the patient's care, nurses deliver care, and are essential in delivering appropriate dignity. The second problem is scarcity and distribution of scarce medical resources. One has to also consider costs of supportive terminal comprehensive care and the immense expenses involved. Often, to ease their problems a case is reviewed and helped in part to be resolved by the hospital ethics committee. Today's health care economy puts room, life support, medical doctors, and nursing costs in hospital ICU's at about $9,000.00 a day. Should the available, limited funds be better distributed to patients with more acute and resolvable medical problems? Although insurance companies pay the majority of costs, it can be very extensive and thus far, society has no clear rules for scarce resource trade-offs. One assesses the ethics which allows patients to have a transplant near the end of life is an emotional decisions,- or this also affects infant care, especially in the pre-mature area.
Medical ethics involve respect for person's life, beneficence (charity) and justice. These thoughts are predominate in the analysis of a case, where sentimentality often supplants thoughtful analysis. Thus, some form of triage needs to be employed. This involves hard work, soul searching and broad, open discussions. The sooner society dives in to address these emotional, powerful decision-making processes, the sooner we can have a better understanding that evolves into effective plans.
At the end of life, patients, families and doctors are dealing with the difficult problems because of the myriad choices and the unknown problems that will be facing the patient, which often change several times during the day or daily, concerning medical treatments and the use of Advanced Directives. The use of Advanced Directives is only a partial tool to help direct the most optimal medical care for best quality of life in the dying phase.
There is a need for a clear path in offering the patient treatments, and when there is futility, removing treatments and going to a comfort care program. The hope is for a peaceful death, but it is not often obtained because of conflicts in what is the most appropriate treatment, meeting the patient's and families' needs, and protecting the sanctity of the medical profession.
It is hard to do what is known as advanced care planning, as it involves a lot of time that is often not available, as time in giving care is the most essential need and must be met. Many algorithms have been devised on how to have discussions, when to have discussions, and the objectives of these discussions on end-of-life care. In some respects, it would be easier to provide a scenario of serious questions for patients with Alzheimer's disease, end-stage-renal disease, advanced cancer, etc. Making clear decisions helps provide a better quality of life at the end of life, which is aided by patients at least approaching the problems by signing DNR and other forms after appropriate discussions. Unfortunately, as the problems change, the discussions often need to be renewed to meet each crisis. This often leads to confusion, as some patients rally and often families wish to change directions, but the rallies are usually short before further failures occur. Thus, even a well-laid plan will often change many times, and it requires understanding of the goals of the Advanced Directives and DNR and other provisions to arrive at a logical goal.
What is an Advanced Directive?
This is a form allowing the patient to express his wishes and give direction for his medical care should he have a life-threatening crisis. In advanced care planning, patients, families and health care providers try to set practical goals for care and also protections for care, which are futile. DNR orders are often written at the initiation of a hospitalization, but it may be wise to prepare these thoughts and have them signed ahead of time. These forms, thus far, have not impacted resuscitation events, either because they're not signed or changes occur which obviate these directives either in the medical care or in the social care. There is also a lot of misunderstanding, either through lack of communication or explanation, of what a true DNR means. Often, as in the Terry Schiavo case, there was conflict within the family, leading to involvement of the political system, which, although unnecessary, complicated the case immensely. Advanced Directives and DNRs complement each other but are not the same, as they don't cover all potential possibilities that may occur. The goal is symptom control and appropriate limitation of treatment to provide a terminal end-stage quality of life.
In most cases, decisions are eventually made easier because of the progression and deterioration of life near the end. It is only through a suffering process that patient, family and physician realization occurs. When there are problems, the use of an ethical committee helps at least debate and provide various scenario solutions, which can be implemented to meet the goals of good patient care. These processes again, unfortunately, involve time, which is often preciously needed not only for the care of the patient under therapy, but as well as other patients, but the process is necessary. The real question is when to make a change and withdraw therapy if necessary? It is only by appreciating how poor the outcomes of resuscitation are when a person has an advanced chronic disease or a catastrophic disease, either from an accident, post surgical complications or otherwise.
When Should A Patient Sign An Advanced Directive And Express DNR Wishes?
Many patients do not wish to discuss death, even though they are aware that it is at some time going to be a reality. Thus, they decline or deny the signing of Advanced Directives and DNRs. These forms are especially valuable when there is conflict with the family not understanding the patient's desires and wishes. The patient assigns either a family member, friend or partner as the surrogate. It is vital that the patient's preferences be discussed and a determination agreed upon if possible. Through trust in a patient's health care provider, these goals can be met as a protection for end-of-life care. Unfortunately, such a trusting relationship is often not developed because many medical life threatening problems are due to a crisis, such as an accident, a need for surgery either for a bowel obstruction or a cancer problem, and thus, the relationship between the patient and the attending house staff, who are often fully involved in the patient's care are not developed. To develop this confidence and trust requires a good medical patient relationship with good communication, empathy, and understanding through explanations. It is vital that recommendations are explained with the hopes and consequences of what is the planned goal.Decisions must advise and assess the potential options and the patient's need to consent to meet their wishes.
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