PART one. The Palliative Care Spectrum: Providing Care Across Settings

Transcription

1 PART one The Palliative Care Spectrum: Providing Care Across Settings

2

3 Chapter 1 An Introduction to Palliative Pharmacy Care Jennifer M. Strickland To palliate means to alleviate. Palliative care, as the World Health Organization defines it, is the active total care of a patient whose disease is not responding to curative therapy. The goals of palliative care include alleviation of pain and other physical and emotional symptoms as well as achievement of the best possible quality of life for both patients and their families and caregivers. Palliative care is applicable for patients earlier in the course of any life-limiting illness, often concurrently with curative or lifeprolonging treatment, and should not only be restricted to the end of life. Palliative care affirms life while providing optimal quality of life, neither hastening nor postponing death. Psychosocial support and bereavement care are key aspects of palliative care. 1 A majority of the early published literature about palliative care was in cancer patients; yet, today, palliative care incorporates patients with many diagnoses, including cancer, heart failure, chronic obstructive pulmonary disease (COPD), acquired immune deficiency syndrome (AIDS), and multiple sclerosis. Additionally, palliative care should be considered for pediatric patients with life-limiting illness and their families. The general approach to palliative care is similar among all populations, although differences exist in the prevalence of symptoms (e.g., cancer patient versus heart failure) and supportive resources required (e.g., child life specialist in pediatric palliative care). In clinical practice, palliative care embodies so much more than a definition or a specific patient population. The Story of Mrs. A You are my sunshine, my only sunshine, you make me happy when skies are gray, you ll never know dear how much I love you, so please don t take my sunshine away, he sings every day as he enters the hospital room to see his beloved wife of nearly 60 years. She has had Alzheimer s disease for nearly two decades. He has been her caregiver, watching her progress and cherishing her moments of clarity, her continued physical health despite progressive dementia, and her ability to respond to music despite very little physical functioning. As each physician told him that his wife had reached the end stage of Alzheimer s disease and that she had a limited prognosis, his greatest concern was that she would be comfortable and comforted by health care professionals, friends, and family. He knew she probably had only months or less to live, but he truly cherished every moment he spent with her, making memories until the last day. As she declined, her physical symptoms rapidly increased, which included worsening pain and dyspnea. From the beginning of her diagnosis, she and her family had special needs that a palliative care team could address. As her symptoms and illness progressed, her need for a specialized type of care, one that optimized her quality of life in the face of curative treatment failures, continued to increase. The Story of the Family D He doesn t want aggressive surgery or radiation or chemotherapy, the patient s chapter 1 An Introduction to Palliative Pharmacy Care 3

4 wife states. He knows that the treatment for metastatic pancreatic cancer is rarely effective, and he just wants to be comfortable for the remaining of his days, the wife states before she describes his life as a renowned high school football coach, the state football records he has amassed, the three children he has fathered (who are now grown with successful and happy lives), and the friends he has cherished. His daughter, who is visiting him at home while the hospice nurse is visiting, asks her dad, Are you sure, Dad, that you don t want any treatment that may cure you? Despite understanding the facts that his pancreatic cancer could not be cured, he knew the next few months would be difficult, potentially filled with pain, anxiety, and difficult decisions. I m ready to walk this path, he stated. My time has come, and all I ask is that the time I have is the best time of my life. Stories like these drive pharmacists and other health care professionals to practice palliative care. These are the patients and families who inspire health care professionals to provide the best possible care to those who may no longer have the potential for cure, but have great potential for comfort as they deal with a life-limiting illness. Palliative care provides emotional and spiritual support, relief from pain and other physical symptoms, and the best care possible. Health care providers who choose to practice palliative medicine often have a passion for these patients and families and also a passion to improve their quality of life for their remaining hours, days, weeks, or years. Palliative care is for any patient who has a life-limiting illness and any patient who needs supportive care. It can be delivered by any health care provider with the skills, knowledge, and passion for providing this type of care. As the population continues to age, health care professionals will increasingly be faced with patients with life-limiting illness who require optimal care intended to improve their quality of life. The Institute of Medicine (IOM) published recommendations for end-of life care. Some of those recommendations include the following: 1. Patients with advanced, potentially fatal illness and their family and caregivers should be able to expect and receive reliable, skillful, and supportive care; 2. Health professionals must commit themselves to improving care for dying patients and to use existing knowledge effectively to prevent and relieve pain and other symptoms; 3. Educators and other health care professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to provide appropriate care for dying patients; and 4. Palliative care should become a defined area of expertise, education, and research. 2 These recommendations outline the need for specialized education and expertise for all health care professionals. Palliative Pharmacy Care provides a practical resource for pharmacists who wish to improve their knowledge and skills in palliative care, ensuring optimal care for patients with palliative needs. Palliative care and pharmacy are ideal partners. In addition to the obvious pharmacotherapy component in palliative care, pharmacists play key roles in communicating with patients and families, ensuring comfort, and providing education and emotional support. The role of the pharmacist in palliative medicine and hospice care has continued to grow over the last decade; it is paramount that pharmacists practicing within this environment, even in brief intervals, be educated and skillful in delivering palliative care services. According to the American Society of Health-System Pharmacists (ASHP) statement on palliative care, the pharmacist s responsibilities in palliative care include both traditional and 4 palliative pharmacy care part one

5 expanded activities (Table 1-1). 3 Within this setting, pharmacists often have a clinical, educational, and oftentimes administrative role due to their responsibilities. Depending on the specific setting, the scope of a pharmacist s practice may differ significantly. For example, a pharmacist working for a pharmacy that contract with a hospice may have significantly different responsibilities than a pharmacist for an inpatient interdisciplinary palliative care team. Thus, the setting often dictates the level of responsibility assigned to the pharmacist. Palliative Pharmacy Care provides a practical approach to palliative care, focusing on aspects of care that will be most valuable to the pharmacist, reviewing published evidence in specific areas (e.g., management of dyspnea in the palliative care patient), discussing practical pearls within the practice, and reviewing a pertinent patient case. The sections and descriptions include the following: 1. The Palliative Care Spectrum: Providing Care Across Settings reviews the history of palliative care and hospice and Table 1-1: ASHP Statement on Palliative Care: Pharmacist s Responsibilities Pharmacists Responsibilities in Palliative Care Settings Assessing appropriateness of medication orders and ensuring timely provision of effective medications for symptom control Counseling and educating other health care professionals regarding medication therapy Ensuring patients and caregivers comprehend and follow directions provided with medications Providing efficient mechanisms for extemporaneous compounding of non-standard dosage forms Addressing financial concerns, specifically in regards to medications Ensuring safe and legal disposal of medications, particularly following death Establishing and maintaining effective communication with regulatory and licensing agencies delivery of palliative care in specific populations, including cancer, non-cancer, pediatric, and critical care populations. 2. Symptom Assessment and Management a practical review of the assessment, pathophysiology, and treatment of non-pain symptoms, including symptoms such as fatigue, anorexia/cachexia, and nausea/vomiting. 3. Pain Assessment and Management a practical review of the pathophysiology, assessment, and treatment of pain, including neuropathic pain and a practical guide to equianalgesic dosing. 4. Beyond Drug Therapy: Key Issues for Pharmacists in Palliative Care provides reviews of communications and ethics in palliative care, as related to pharmacists; provides practical guides to the role of pharmacists and education as well as development of palliative care services. Each chapter provides clinical pearls that highlight key points within the chapter. Additionally, many chapters include casework at the end for the practitioner to apply the principles learned in each chapter. These cases often highlight the complexity of palliative care and the valuable role a pharmacist can play. Palliative Pharmacy Care allows a practitioner who is new to this setting the opportunity to develop his or her knowledge and skills through reading and casework. It also allows pharmacists who already practice in palliative care the opportunity to expand and deepen their knowledge and skills. Overall, Palliative Pharmacy Care provides the pharmacist with a resource that provides a review of published evidence in the field, practical clinical pearls regarding the care and approach to palliative care patients, and an opportunity to enhance skills through a case-based approach. References 1. World Health Organization. Cancer pain relief and palliative care, report of a WHO expert committee. chapter 1 An Introduction to Palliative Pharmacy Care 5

6 Geneva, Switzerland: World Health Organization; Institute of Medicine. Approaching death: improving care at the end of life. Washington, DC: IOM; American Society of Health-System Pharmacists. ASHP statement on the pharmacist s role in hospice and palliative care. Am J Health-Syst Pharm. 2002; 59(18): palliative pharmacy care part one