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Division of Pulmonary and Critical Care Medicine, Eastern Virginia Medical School, Norfolk, VA, USA
To cure sometimes, to relieve often, to comfort always
—Hippocrates, Greek Physician, Father of Western Medicine (460–370 BC)
The prime goal of the intensive care unit is to provide temporary physiologic support for patients with potentially reversible organ failure allowing their acute illness to resolve and enabling the patient to return their previous level of functioning. The guidelines of the Society of Critical Care Medicine state that “in general ICU’s should be reserved for those patents with reversible medical conditions who have a reasonable prospect of substantial recovery” [1]. Despite this recommendation, almost all patients with serious and life-threatening illnesses in the USA regardless of their prognosis or prospect of recovery are admitted to an ICU, unless the patient or his/her surrogate specifically declines ICU admission. Consequently, with increasing frequency patients with end-stage and terminal illnesses are admitted to the ICU. In the USA it is exceeding uncommon for intensivists to refuse ICU admission; if a bed is not immediately available, one is “made.” This contrasts to the situation in most Western nations in which not all requests for an ICU bed are honored. Indeed, refusal of ICU admission is common, with a rate that varies from 24 to 88 % [2–8]. Wunsch and colleagues compared the use of ICU services during terminal hospitalization in England and the US [9]. While the overall population mortality statistics were similar between England and the US, 5.1 % of all deaths in England involved the ICU compared to 17.2 % in the US, representing 10.1 % of hospital deaths in England versus 47 % in the United States. ICU care was used for 31.5 % of medical deaths and 61.0 % of surgical deaths in the US versus 1.9 and 8.5 % of deaths respectively in England. These data suggest that in the USA end-of-life issues and realistic goals of care are not adequately addressed in patients with chronic and life threatening illnesses.
Americans appear to be unaccepting of death and frequently want “everything to be done” in the face of certain death. This may be due to unrealistic expectations that patients and their families have with regards to what modern medicine can actually achieve. These unrealistic expectations are perpetuated by misinformation provided by the lay press, television and the Internet. It is likely that in many instances physicians contribute to these unrealistic expectations by failing to provide honest information regarding the likelihood of a prolonged hospital course, the need for prolonged rehabilitation in a long term acute care facility and about expected 1-year survival, functional status, cognitive status and alternatives to continuing aggressive life supportive measures [10]. Azoulay and colleagues interviewed family members of ICU patients after meeting with a treating physician [11]. In 54 % of cases the family representative failed to understand the diagnosis, prognosis or treatment plan of the patient.
Admission of a dying patient with irreversible disease to the ICU serves only to transform death into a prolonged and painful experience. It should be appreciated that death is the only certainty of life, and that the ICU is not a halfway station between life on earth and the hereafter. The function of the ICU should not be to prolong death. In terminal or incurable illnesses, our aim should not be to preserve biological life, but to make the life that remains as comfortable and as meaningful as possible. The culture of our current health care system is highly invested in “aggressive” treatment of terminal disease with the notion that death represents medical failure. However, the ethical principles of patient autonomy dictates that patients have the right to determine the use of medical technologies and the use of medications to control pain near the end of life. In addition, policy statements of national organizations recognize the right of competent patients to forgo treatment, even if refusal may lead to death [12–14]. Withholding and withdrawing life supportive measures, a practice which was once considered controversial is now widely accepted. As a general principle, when the goals of cure cannot be achieved with aggressive life-sustaining treatments such as mechanical ventilation, it is appropriate to withdraw these treatments and to allow death to occur naturally [13–16].
Because most critically ill patients are unable to participate in end-of-life treatment decisions, family members are generally asked to speak for the patients, and to varying degrees, to participle in decision making. Yet shared decision making about end-of-life treatment choices is often incomplete, with family’s having a poor understanding of the ultimate decisions that are made [17]. Patients and relatives faced with end of life issues identify poor communication with the treating physicians as the greatest source of frustration and anxiety [18, 19].
Palliative Care
Palliative care originated as end-of-life care in the 1960s. Since then the scope of practice of palliative care has expanded far beyond its roots. The goal of palliative care is to maintain and improve the quality of life of all patients and their families during any stage of illness, whether acute, chronic, or terminal [14]. According to the World Health Organization (WHO), palliative care aims to prevent and relieve suffering by early identification, assessment, and treatment of pain and other types of physical, psychological, emotional, and spiritual distress [20]. Ideally, all patients should receive palliative care concurrently with medical care, the elements and intensity of which are individualized to meet the patient’s and family’s needs and preferences. Palliative care should not be restricted to end-of life care but rather involves determining of the goals of care along the continuum of the patients illness.
The primary goal of palliative care is to achieve the best possible quality of life for patients’ for as long as they are alive and to support the patient’s family while the patient is alive and after death. Clearly, palliative care should be available near the end of life. However, it should also be available at any point during the course of a progressive or chronic disease or critical illness when the patient becomes symptomatic. An important concept is that, in general, palliative care should be available when curative/restorative care begins, while curative/restorative care continues, after life-prolonging treatments are withheld or withdrawn, and, for the patient’s family, after the patient’s death.
“Principles” of Palliative Care [14]
Palliative care is foremost centered on the patient and the patient’s family (with the patient defining his/her family constellation). It recognizes the right of competent adult patients to determine their goals of care both before and after they face disabling symptoms and approach their end of life
Palliative care includes identification of, and respect for, the preferences of patients and families. This should be done through careful assessment of their values, goals, and priorities, as well as their cultural context and spiritual needs.
Palliative care encourages and supports family involvement in planning and providing care to the extent desired by the patient.
Palliative care should begin at ICU admission and then be adjusted, analogous to curative/restorative care, to meet the needs of the patient and family in accord with their preferences
All patients with symptomatic or life-threatening diseases, particularly those with chronic or advanced respiratory diseases or critical illnesses, regardless of age or social circumstances, should have access to palliative care.
Health care providers should strive to develop a comprehensive, interdisciplinary approach that provides palliative care sensitive to the patient’s and family’s needs and respectful of their cultural and spiritual values
Bereavement care for families is an integral part of palliative care.
Health care providers should have an appropriate level of competence in palliative care. Their training and educational experiences should help them to acquire the core competencies necessary to provide compassionate and individualized palliative care. They should appreciate the limits of their knowledge and skills and know when to seek consultation from palliative care experts.
There is evidence that palliative care programs in the ICU play a key role in improving communication with patients’ families regarding diagnosis, prognosis, goals of care, management of pain and anxiety and provision of spiritual and emotional support [21–23]. Palliative Care programs that include structured family meetings to discuss patient-specific goals and advance care planning and which address the emotional and spiritual well-being of patients and families have led to improvement in quality of care, effective use of resources and enhanced staff satisfaction [24]. A study done by Nelson and colleagues suggest that an ICU “palliative care bundle” improves patient comfort, family communication and end-of-life decision making [25]. This bundle of Palliative Care measures includes:
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