O According to the World Health Organization (WHO), "Palliative care is defined as the active total care of patients whose disease is not responsive to curative treatment. The goal of palliative care is to achieve the best quality of life for patients and their families."
The goals of palliative care include enhancing quality of life while maintaining or improving functionality.
Palliative care is appropriate for all incurable diseases including cancer; chronic obstructive pulmonary disease; dementia, including Alzheimer's disease; Parkin son's disease; chronic cardiac disease; stroke, renal failure; hepatic failure; multiorgan failure; diabetes mellitus; etc.
^^ Following a complete assessment of the patient, developing a comprehensive therapeutic plan that utilizes the fewest number of medications to achieve the highest quality of life is essential.
® Palliative care is more than just pain management. It includes the treatment of symptoms resulting in the discomfort for the patient, which may include nausea, agitation, anxiety, depression, dyspnea, cachexia, constipation, diarrhea, pressure ulcers, edema, etc.
® Involving the patient and caregivers into the development of the therapeutic plan demonstrates responsible palliative medicine.
Assessing positive therapeutic outcomes includes resolution of symptoms while minimizing adverse drug events.
® Patient and caregiver education is vital to ensuring positive outcomes. INTRODUCTION
O1 According to the World Health Organization (WHO), "Palliative care is defined as the active total care of patients whose disease is not responsive to curative treatment. The goal of palliative care is to achieve the best quality of life for patients and their families."1 Since the word, "palliate," literally means "to cloak," the WHO goal of achieving high quality of life is consistent with managing disease-related symp-toms.2 Palliative care is an approach to care focusing on patients and their families and the challenges they face associated with life-threatening illness.3 The goal of care is to prevent and relieve suffering by means of early identification, assessment and treatment of pain and other physical symptoms, including associated psychosocial, emotional, and spiritual concerns.1 The WHO goes on to state that the most effective palliative care is provided by a team of health care professionals. Palliative medicine is rapidly becoming a well-recognized medical specialty throughout the world4. This expanding specialty in medicine is much needed due to the increased number of patients with chronic, slowly debilitating diseases.2
The term palliative care is frequently used synonymously with hospice, and although hospice programs provide palliative care, palliative care has a much broader application. The goals for both types of care are similar; however, differences exist. In the United States, hospice is defined by Medicare and other third-party payers as a medical benefit available to individuals who have 6 months or less life expectancy if the disease runs its typical course.5 Hospice care guidelines and regulations are typically defined by federal regulations. Palliative care, on the other hand, may be provided at any point during the disease process and is not limited to the last 6 months of life as is the case with hospice care. Patients and families may receive some aspects of palliative care beginning at the time of diagnosis of a life-limiting illness. Palliative care, whether it is through a hospice program or a palliative care service may be delivered to patients in all care settings including the hospital, outpatient clinic, extended care facility, or at home.6
Palliative care is not only a philosophy of patient care, but also a highly organized system to deliver care. The foundation for providing quality palliative care centers around the active participation of an interdisciplinary group or team of professionals who work closely together to meet the goals of the patient and family. Palliative care team members include representatives from medicine, nursing, social work, pharmacy, chaplaincy, nutrition, rehabilitation, and other professional disciplines. The involvement of multiple disciplines provides a holistic approach to the patient's care. Figure 4-1 provides a diagrammatic view of how a palliative care team may work together in caring for the patient.
The goals of palliative care include enhancing quality of life while maintaining or improving functionality.8 Given this goal of patient care, palliative care should most logically be delivered to patients from the onset of any chronic, life-altering disease. Palliative care is not a new concept, in fact, it is one of the oldest approaches to patient care. Before many of our modern medical and therapeutic advancements were developed, curative treatments were not normally available9. Provision of comfort and addressing quality of life during illness was considered the mainstay for patient care. During the 20th century, advances in medical care, nutrition, public health, and trauma care resulted in fewer patient deaths attributed to acute illness or injury. Medical management shifted focus from comfort to a death-denying approach with prolonging life as the primary goal. With this shift in focus, palliative care became less of an emphasis until 1967, when the first modern hospice was established in London, England. Today the palliative care philosophy attempts to combine enhanced quality of life, compassionate care, and patient and family support with modern medical advances.
Examples of Support Team
* Physical Therapy
* Legal Assisiance
- Respiratory Therapy z^1 I
FIGURE 4-1. An illustrative view of how a palliative care team works together.
FIGURE 4-1. An illustrative view of how a palliative care team works together.
Although the modern hospice model of care originated in England in 1967, the first hospice in the United States was founded in 1974. Since that time, hospice acceptance and utilization has increased in the United States. The number of Medicare beneficiaries enrolled in hospice increased by 100% between 2000 and 2005.10 Medicare spending for hospice care tripled during that same time period, reflecting a greater number of patients receiving the benefits of this type of care. The Medicare Hospice Benefit is now the fastest growing benefit in the Medicare program, representing 3% of Medicare costs.11 The growth between the early 1990s and 2005 was significant.
When the hospice Medicare benefit was introduced in 1982, most patients had a terminal diagnosis of cancer, representing over 90% of beneficiaries.1 In 2005, less than 50% of patients receiving the Medicare Hospice Benefit have a cancer diagnosis, with the majority of hospice patients having other chronic or life-limiting diseases. Unfortunately, the average length of time a patient receives hospice care also decreased over time. Initially, the mean length of stay was 70 days per patient, but in 2005, the mean length of stay fell to approximately 20 days, resulting in less time for patients and families to benefit from the many services offered through hospice care.
Because palliative care and hospice have not typically been part of the traditional medical mindset, ongoing education has been directed toward physicians and other health care professionals to encourage them to introduce palliative care before a life-limiting disease has progressed to advanced stages. The goal is to offer hospice to patients when they have several months of life expectancy rather than waiting until the last days or weeks of life. In order to accomplish that, physicians are encouraged to discuss advanced care planning with individuals at the time of diagnosis of any chronic, life-limiting disease. As the health care community and the public recognize that psychosocial, spiritual, and emotional support of the patient, family, and caregiv-ing system provides the foundation for coping with changes as patients decline, health care professionals are beginning to incorporate aspects of palliative care in the treatment plan sooner.
As health care providers recognize the benefit of palliative care for patients with any life-limiting illness, the approach to patient care has expanded beyond the cancer model of care. Understanding differences and similarities in pathophysiology of various disease states and their respective symptoms equips palliative care providers to develop appropriate individualized plans of care for their patients.
In many respects, understanding the pathophysiology of multiple end-stage disease states is daunting, yet, in palliative care, the emphasis is not so much on the disease as it is on the associated physical, psychological, social, and spiritual symptoms. Palliative care focuses on symptom management for patients with progressive, life-limiting illnesses from diagnosis through death where the pathophysiological impact of disease on a patient's symptoms may vary greatly depending on the stage of a patient's illness. Palliative care is appropriate for all incurable diseases including cancer; chronic obstructive pulmonary disease; dementia, including Alzheimer's disease; Parkinson s disease; chronic cardiac disease; stroke; renal failure; hepatic failure; multiorgan failure; diabetes mellitus; etc.
For the purpose of this chapter, pathophysiology will not be a primary focus. Rather, the philosophy of managing physical, psychological, social, and spiritual symptoms in order to maintain quality of life and prevent suffering is discussed within the context of progressively incurable illnesses. This philosophy frequently deviates from principles and concerns related to the management of patients where prolonging life is the goal.
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