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In the twilight of life each experience is different. Death is not a failure, it is part of life; it is an event that has to be lived.
No human being should be deprived of the right to live his or her own death in dignity, even when the expectation of treatment is not a cure, as is the case of those who require palliative care. Such care is provided in a total, active and continuous way to patients and their families, and is delivered by a trained interdisciplinary team. The goal of the treatment is not to prolong life, but to improve, to the extent possible, the present conditions of the patient and their family, addressing their physical, psychological, social and spiritual needs, including the mourning process.
At the end of life, empathy, tact, the expression of closeness and, in particular, communication between patients, family members and healthcare professionals are highly valued; in other words, the hospitality and welcome that healthcare providers can offer.
Patients in the last hours and days of life may experience physical suffering, emotional, spiritual and social distress. In this phase they require careful symptom management and families may need assistance and training as death approaches, such as support when they receive notification of their loved one’s death and bereavement counselling.
Communication about the patient’s condition, prognosis and treatments administered are key aspects that influence the quality of the care patients receive. Adequate and honest information allows patients and their families to participate in decision-making processes regarding the care needed at the end of life. In addition to this, the uncertainty about death experienced by patients and their families decreases when fears may be expressed to health care staff.
The rights of individuals to receive information about their state of health and to participate in end-of-life decision-making processes are widely recognized by different national and international organizations. Despite these legal regulations, however, many healthcare professionals continue to avoid providing sufficient information to family members and patients regarding the death process, which would help in decision making. Sometimes, a “conspiracy of silence” or “pact of silence” is created in which family members, caregivers and healthcare professionals withhold information from the patient.
Healthcare professionals are hesitant to provide accurate information to patients due to fear of hurting patients and potential legal uncertainty. Healthcare staff who feel they lack training or specific skills to handle end-of-life situations may affect the quality of care patients receive. On the other hand, many patients and families feel that they are not informed and cannot participate in the decisions that are made regarding the care they need. When they are informed, their attitude is often different: patients may deny or avoid information and family members may maintain a protective attitude toward the patient so that the patient does not suffer.
The consequences of inadequate communication and information are usually negative and result in a feeling of isolation of the patient, some distress in family members or dissatisfaction with the care received.
Caring for patients at the end of life is a challenging task that requires not only consideration of the patient as a whole, but also an understanding of the family, social, legal, economic and institutional circumstances surrounding their care. Unfortunately, there are many myths and misconceptions about what may or may not be ethical and legal in this context.
Fear of litigation can lead to unnecessary interventions or prevent physicians from acting in a completely ethical manner when faced with a patient with a potentially life-threatening illness. A study found that up to 93 percent of physicians in high-risk medical specialties (i.e., emergency medicine, general surgery, orthopedic surgery, neurosurgery, obstetrics/gynecology, and radiology) report practicing defensive medicine in that they performed tests beyond what they felt was clinically necessary.
Illegal practices may have serious consequences for both the patient and the physician. Negative consequences for patients include receiving unwanted treatment or not receiving the desired treatment. Both scenarios could result in civil and criminal sanctions for physicians. It is important to note that the absence of an explicit legal authorization for a given action does not mean that the action is prohibited. Medicine remains a largely self-regulated profession. There are comparatively more laws regarding end-of-life care with respect to other medical interventions. However, the law does not and cannot directly address all interventions and procedures.
Understanding the legal aspects of end-of-life care should give the practicing physician the confidence and freedom to act ethically and reasonably. When in doubt physicians should consider an ethics consultation, seek legal advice or risk management assistance.
Dr Lida Ordoñez
Family Doctor and Coordinator at the Palliative Care Unit in Quito, Ecuador.
Province of South America