Palliative and End of Life Care and Regulations

End-of-life care pertains to the regulation of an individual’s immediate environment by implementing measures that would augment the level of care to the individual as he approaches death. End-of-life care may not be defined by a specific duration but through the kind of care that is provided to an individual. Although the time of death of a patient may not be clearly identified, there are some key features that could help pinpoint whether the end of life care should be given. Other terms that pertain to end-of-life care include palliative care and hospice care and these terms may also be used to signify that same concept.

Although there is a need to create a precise definition for end-of-life care, there are three key features that pertain to this concept. Firstly, the occurrence of a chronic medical disease or condition is primary evidence that end-of-life care needs to be provided to a patient. Secondly, a patient who presents symptoms that are constantly present in a patient and which impairs the patient from his normal functions is in need of end-of-life care. Thirdly, end-of-life care should be provided to an individual when his medical disorder is known to eventually lead to his demise.

There are some instances when the need for end-of-life care is confused with a condition wherein an individual is simply ill and could not function normally for a temporary period of time. It is thus important to identify a threshold in distinguishing end-of-life care from the regular hospital care of a patient. Medical research has defined that the end-of-life course as a series of stages that consist of different yet interrelated aspects of an individual. The end-of-life process is thus composed of a physical change, which involves a modification of the motor capabilities of a patient. In addition, the end-of-life process also involves an emotional aspect because the patient will feel unique sentiments with regards to his ailment and consequences to his life. The spiritual condition of a patient in an end-of-life process is also affected because he now realizes the importance and needs to reassess his beliefs and will call on spiritual healing to make him feel better. The end-of-life process is also associated with a financial burden because it is significantly expensive to maintain healthcare with a combination of medical procedures and therapeutics.

The end-of-life process also affects the patient’s immediate environment. Caregivers come into the picture as they provide professional care to the patient in need of caring and monitoring. The patient will also need other forms of social support, especially from his family members. At the same time, the members of the patient’s family will also go through the same end-of-life process because their roles in the family will change, as the patient’s role in the family gradually diminishes due to his illness. The family members may also sense some form of stress because of the major change that is happening to their loved ones and the impending arrival of death. Ultimately, the family members will also go through the stage of bereavement once their loved one passes away and at end of the entire journey.

Several indicators have been identified to determine whether the end-of-life care provided to a dying patient is of good quality. The physical condition of a dying patient generally reflects the quality of end-of-life care that is provided to him. It is a common rule of thought the dying patient should be put in a most comfortable condition in order to make him feel as good as he could as he approaches his death. A dying person does not receive quality end-of-life care if he himself does not feel rested or comfortable during his last weeks or months. The psychological condition of a dying patient also reflects the kind of end-of-life care that is given to the patient. A patient who is calm and ready to face his death is often equated to high-quality end-of-life care. On the other hand, a patient who presents with a condition filled with fear and anger at his current ailment is not receiving quality end-of-life care. It is thus important that an explanation of the current condition of the patient be presented to the patient himself so that he will understand what is going on and where his condition is heading towards so that he will not feel misled by his caregivers and immediate family members.

Appropriate end-of-life care is also associated with stable spiritual beliefs in the dying patient and he does not show any confusion that his philosophical standpoint is being tested by his current grave illness. In addition, a dying patient who received quality end-of-life care often shows his hopes that he will eventually get better, and if not, that he is heading towards to better place where he can find peace and rest. A patient receiving quality end-of-life care is also satisfied with his current condition, even if this means that he spends his days mostly in bed and inside his room. It is thus acceptable to consider the end of life care as another form of maintenance of an individual’s quality of life because this stage of the patient is still considered as a part of his life and thus utmost care and concern should be provided to the patient.

End-of-life care is generally influenced by several factors. The setting of the patient during his last few months or years often influences the quality of end of life care that can be provided to him. In addition, the kind of education that the caregiver has received also influences the kind of end of life care that is provided to a dying patient. If the caregiver is not knowledgeable on the critical aspects of providing end of life care to a dying patient, the patient himself directly experiences the consequences of this. Another factor that influences end of life care is the demographics of dying individuals in a community. When there are significantly high numbers of individuals in a particular community that need end of life care, there the community may have adjusted to this population and have created several hospital care centers within the community in order to provide access to these individuals in need of end of life care. On the other hand, when a community is composed of young individuals and only a few elderly individuals, there might not be any hospice care centers that would be able to accept a dying patient for end of life care.

The geographical location of a dying patient is also a factor in receiving end of life care. In the Eastern part of the world, such as the Asian countries, hospice care centers are not common and thus the immediate family members are the individuals who come into the front line when there is a need to provide end of life care to a dying patient. On the other hand, countries in the Western world include hospice care centers in almost all cities and states, and thus a dying patient may be brought to any of these facilities in order for them to receive end of life care. The local and national policies of a city may also influence of quality of end of life care that may be available to a dying patient. There are certain areas in countries wherein there is not much government support in the creation of hospice care centers, as well as provisions for healthcare personnel to attend to these dying patients.

The review paper of Robert H. Blank (2001) entitled “Technology and death policy: Redefining death” examines the ethical and legal implications of death in its different forms. The article comprehensively explains the current concepts and definitions of death while integrating technological innovations in brain research and imaging technologies. The author also attempts to explain the difference in the definition of death several decades ago, which actually only involves the stoppage of breathing through the lungs and beating of an individual’s heart. However, due to the advances in medical equipment and technologies, it is now possible to keep individual breathing through the use of a ventilator. Hence the classical definition of death has now evolved to the cessation of the functioning of the brain amidst the prolongation of heart and lung function due to the employment of medical equipment that has the capability of replacing the functions of the heart and lungs. The article also examines the related issues of human life, as well as the benefits and risks of disconnecting an individual from a life support system. The effects of such choices are also discussed in terms of their impact on the values and conscience of society. The implications of brain death are also discussed in connection to the continuation of coverage of health insurance amidst indications that a patient in a vegetative state is actually brain dead. The employment of methods for euthanasia is also presented in terms of cremation and the administration of lethal injections for the preparation of a patient for death. Possible conflicts and moral issues are examined in detail with respect to the psychological load that the immediate family members are carrying.

The article authored by Peter Monaghan (2002) entitled The Unsettled Question of Brain Death” discusses the medical and ethical issues on how to handle a patient with a non-functioning brain. The author also provides his reaction to a book written by Margaret Lock entitled “Twice dead: Organ transplants and the reinvention of death” which describes that the definition of brain death changes from one country to another. The article describes how Ms. Lock has observed brain death is perceived according to different cultures of Japan, the United States, and Germany, to name a few. It is actually interesting to know that in these particular countries, the definition of brain death is swayed to another dimension because the concept of organ donation and transplant is added to the complex issue. Hence it is much more difficult to deal with death in this modern age, because not only is brain death implicated in the scenario, but also whether it is already possible to collect specific organs of a brain-dead patient in order to use this in organ transplant procedures. The employment of life support systems has thus initiated more issues to be debated and discussed, instead of just achieving one goal, and that is to sustain the life of the patient. Ms. Lock’s perception of brain death is discussed in Monaghan’s article which includes that brain death is simply a biological issue and that the moral and cultural issues connected with brain death vary depending on the country where the incident is happening. It is also interesting to know that different countries accepted the concept of brain death during different decades of the 20th century, with Japan debating over the issue for almost 30 years and Sweden contemplating on the topic for almost 20 years. This article successfully points out the culture plays a major role in the concept of brain death hence the values of Asian societies may not always be the same as that of Western societies.

Brain death has been defined in 1968 as a condition characterized by three major features. A brain-dead individual is not capable of responding and receiving stimuli from his surrounding environment. In addition, a brain-dead person does not have the capacity to perform spontaneous actions including breathing and beating of the heart. Lastly, a brain-dead person does not show any reflex actions. The cessation of the pumping of the heart can be technically determined through the employment of an electroencephalogram (EEG) which detects any electrical activity that originates from the brain of an individual. Thirty years after the establishment of the definition of brain death, additional descriptors were incorporated into the concept. McMahan (1998) has further presented that brain death is defined by the three characteristics described above, as well as the condition that the three characteristics are irreversible, resulting in the loss of an individual’s ability to breathe on his own and involuntary maintain a beating heart.

The controversy over brain death was triggered by the inception of innovative medical equipment such as the life support system that is commonly attached to a patient that is in a comatose condition. The life support system provides a means for a comatose patient to continue breathing through the use of a respirator. In addition, the development of defibrillators serves as a tool in introducing electrical impulses to the chest of an individual who is experiencing either a loss of heartbeat or an improper rhythm of the heart. The controversy over brain death started when the classical definition of brain death involves the loss of capacity in breathing and maintaining a heartbeat. However, with the development of new medical equipment that could revive and maintain the essential processes of the human body, the definition of brain death became vague. The concept of brain death is also further complicated by the questions raised by healthcare providers wherein these companies would like to define the limits of their coverage, especially when the person that is covered by healthcare is already considered brain-dead.

The proposed cerebral definition of death is radically different because the concept of brain death is now defined based on two important functions of the brain. Each critical brain function has been described to be situated in separate areas of the brain hence the proposed cerebral definition of death requires that both critical regions of the brain should be confirmed to be nonfunctional before an individual can be validly claimed as brain-dead. The two critical and essential regions of the brain are the cerebral cortex and the brain stem. The cerebral cortex is responsible for maintaining the consciousness of an individual. This brain region is also accountable for the capacity of an individual to perform any mental functions such as thinking and reading. The brain stem, on the other hand, is responsible for providing an individual the dexterity and adroitness in performing motor activities and movement. Research has claimed that the brain stem remains functional even when the cerebral cortex has been determined to be nonfunctional. This observation can also be observed a few minutes after the death of an individual, wherein some individuals tend to slightly jerk by themselves even when they have also lost their heartbeat and have already stopped breathing. It should be remembered that breathing and heart activities are maintained by the cerebral cortex, which is only one of the two critical regions of the brain. The classical definition of brain death states that the nonfunctioning of at least one of the two regions of the brain is enough to ascertain the death of an individual. However, controversy has now arisen because of the emergence of new medical equipment that can replace the lungs and the heart of an individual, thus substituting for the cerebral cortex. There has been a debate with regards to this new medical setting because even if the individual continues to breathe and keep a pulse, the individual remains unconscious and unresponsive and these features of normal mental functioning can not be substituted by any medical equipment and at the same time, can not be reversed to the original normal condition.

It is difficult to institute a policy defining persistent vegetative state (PVS) patients as brain-dead because these patients are actually not considered as unresponsive but only have a dysfunctional motor capacity. Patients who have been classified to be in a persistent vegetative state are known to carry an unbroken brain stem and a damaged cerebral cortex. Hence these patients have only one critical region of the brain, the cerebral cortex, that is nonfunctional and the other critical region, the brain stem, remains normal and functional. The loss of function and eventual destruction of the cerebral cortex is generally due to the insufficiency of blood supply and thus oxygen to the brain for a critical few minutes of which the patient experiences a comatose condition that could run for days or even weeks. Once the patient gets out of the comatose stage, the patient is then awake but not conscious of his surroundings. PVS patients usually show upper digestive tract movements such as coughing and choking hence it is difficult to say that PVS patients are brain dead.

Countries outside the United States handle the ethical problem of death definition in a different way. In the United States, brain death is defined as the loss of ability in maintaining a heartbeat and breathing through the loss of function of the cerebral cortex, which is the main brain region that controls such operations. However, in other countries such as Japan, brain dead is only considered as a medical condition and the patient is still considered as living. Hence there are major differences on how related activities with brain dead patients in other countries. In the United States, it is legal to remove specific organs of a brain-dead patient especially if the patient earlier signed a consent form that indicates his willingness to donate his organs for transplant to another individual. In Japan, on the other hand, the acquisition of the organs of the brain dead patient has not been legalized until 1997 because they consider a brain dead patient as still alive yet these individuals do not have the capability of breathing on their own hence the need for a respirator is necessary. The employment of a life support system is also considered as a part of the brain dead patient and they will never unplug the life support system unless some other complication happens to the patient that results in severe detrimental effects to the patient. In Denmark on the other hand, a patient is considered to be legally dead when a pulse and breathing is not evident in a patient any longer. This country does not consider the brain as an essential component of the life of an individual hence the option of employing a life support system is not necessary in their medical settings of prolonging or supporting a patient that is in a critical condition.

References

Blank RH (2001): Technology and death policy: Redefining death. Mortality 6(2):191-202.

Ganzini L, Harvath TA, Jackson A, Goy ER, Miller LL and Delorit MA (2002): Experiences of Oregon nurses and social workers with hospice patients who requested assistance with suicide. N. Engl. J. Med. 347:582-88.

Materstvedt LJ, Clark D and Ellershaw J (2003): Euthanasia and physician-assisted suicide: A view from an EAPC ethics task force. Palliat. Med. 17: 97-101.

McMahan J (1998): Brain death, cortical death and persistent vegetative state. In: Kuhse H and Singer P (eds.), A companion to bioethics (pp. 250–260). Oxford: Blackwell.

Miller LL, Harvath TA, Ganzini L, Goy ER, Delorit MA and Jackson M (2004): Attitudes and experiences of Oregon hospice nurses and social workers regarding assisted suicide. Palliat. Med. 18: 685-691.

Monaghan P (2002): The unsettled question of brain death. Chron. Higher Educ. 48(24):A14-A18.