By Ellen Bartoldus, C.S.W.
NYCLTCEN Board Member and Assistant Administrator, Wartburg Lutheran Home for the Aging
"Disease can destroy the body but pain can destroy the soul." (1)
The struggle against illness and death is often a struggle against pain, powerlessness and loss of meaning. It is often said it is not fear of the moment of death which plagues us, but rather the process of dying, the fear of pain and abandonment, of things left unsaid and undone which make the act of dying so difficult. Medical technology, for all of its positive accomplishments has made dying more frightening, as one fears the loss of self to machines and isolating processess, keeping one alive for a time but leaving one spiritually and emotionally bereft. For many of our patients, particularly within the long-term care community, it is the fear of physical, emotional and spiritual suffering which creates the most painful dying experience.
While modern medicine has made great strides in curing illness and prolonging life, we must acknowledge that there are conditions we cannot cure, making physical decline and death inevitable. As health care professionals, our response to these conditions must be rooted in our ethical responsibility to speak the truth about prognosis and treatment options, while assisting an individual in determining what is in his/her best interests in light of personal values and life choices.
The Hospice movement has taught us much about caring for the dying, and has laid the groundwork for our understanding of death as a process, rather than an event. As Hospice services have become available to nursing home residents under the Medicare program, a relatively small number have received this specialized care. But many of our residents do not qualify for Hospice servcies based on the federal requirement of a six month terminal diagnosis and subsequent reimbursement issues. Additionally, Hospice is frequently called in during the last several weeks of life, thereby limiting the full benefit of the program. Other options must be developed to meet the needs of dying residents for whom Hospice is not accessible. A palliative care model offers an alternative.
The concept of palliative care offers, total active care for individuals whose disease is not responsive to curative treatment. Control of pain, management of other symptoms, and meeting of psychological, social and spiritual needs, seeks to support the best quality of life for individuals with life-limiting illnesses. It does not preclude the use of aggressive treatment options but clearly focuses on choices within the context of a benefit/burden analysis concerning individual goals and belief systems. It can provide alternatives to patients and support their autonomy in directing their lives, as well as their deaths. Palliative care is not the withholding of treatment but rather a proactive treatment plan appropriate to the end stages of life.
The United Hospital Fund through its Palliative Care Initiative has begun a multi-year research and demonstration project whose goals are to analyze and improve the quality of hospital care for persons near the end of life and to promote new hospital-based palliative care services in New York City hospitals. Five participating hospitals have developed a variety of palliative care models based upon the individual hospital's culture and organization. The Fund will publish a report on end-of-life issues in 1998, drawing heavily on data collected from these hospitals in an attempt to understand what factors effect the delivery of care near the end of life.
While research shows that many people spend their last days in acute care, many elderly die in a long-term care setting. The integration of a palliative care model into the nursing home may very well provide an opportunity to build upon the Hospice philosophy and expand our ability to care for and be present to our dying residents.
While nursing homes have considerable expertise in an holistic approach to resident care, little attention has been given to the identification and management of pain in the elderly, particularly when it is chronic and the result of non-malignant disease. The management of pain is a critical issue in the provision of palliative care. "Health care professionals... struggle with ethical issues of pain management. Pain is a uniquely individual experience, and communication regarding pain creates dilemmas for the patient, family, caregivers and professionals."2 The growing number of residents suffering from dementia or other cognitive impairments create an additional challenge. Impaired persons are less likely to report pain and yet may be more susceptible due to disease and frailty. Concerns about the possibility of hastening death, fears of over medication and addiction, as well as assessment of the quality and intensity of pain, complicate our ability to deal with this issue effectively. The development of a skillful approach is clearly needed in the long-term care setting.
In addition to the management of physical pain, palliative care addresses
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