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 "A Primer for Providing Quality End-of-Life Care" 
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Post "A Primer for Providing Quality End-of-Life Care"
This article, "Beyond Pain Management: A Primer For Providing Quality End-of-life Care," was published in 2000 and is posted to The Internet Journal of Family Practice. Though the article is addressed to family physicians, it's understandable by laypeople.

The article, written by a hospice MD and palliative care RN, covers these topics: dyspnea (shortness of breath), anxiety, depression, gastrointestinal complaints, delirium, cachexia/anorexia (weight loss), asthenia (profound tiredness), and signs that the end may be approaching (Cheyne-Stokes respirations, decreased or non-existent urine output, inability to take in food and liquid, and declining cognitive status).

Here's a short excerpt that captures the spirit of the article:

€"I'€™m sorry, but there is nothing more that we can do."

Imagine what it must be like to hear those words: so sobering, so isolating, so final, and so untrue. Yet they are spoken and heard far too often in physician offices and hospitals. ...

The ideal environment would be one in which the patient and family would be able to plan ahead for the death and where the center of control is wrested back from the medical sphere and returned to the patient.


I've copied the abstract and some of the introduction below. You can find the full article (for free) online at:
http://www.ispub.com/ostia/index.php?xm ... n2/end.xml

Robin



Beyond Pain Management: A Primer For Providing Quality End-of-life Care

by Linda P. Tomko MD, Instructor, Assistant Medical Director, Department of Family Medicine, Jefferson Hospice, Jefferson Medical College, Jefferson Health System and Terri L. Maxwell RN, MSN, AOCN,
Executive Director, Center for Palliative Care, Department of Family Medicine, Jefferson Medical College

Citation: L. P. Tomko & T. L. Maxwell : Beyond Pain Management: A Primer For Providing Quality End-of-life Care . The Internet Journal of Family Practice. 2000 Volume 1 Number 2

Abstract

Providing excellent care for a dying patient is something all patients deserve. Hospices and palliative care centers exist in many areas to aid primary care physicians and patients through this difficult time. It is important to remember that most patients want to prepare for death, if at all possible. Everyone does this in his or her own way, but oftentimes concern about pain and symptom management interfere with this very involved and valuable process. Being prepared to treat these symptoms as well as addressing your patient's emotional needs is imperative. Referral to a hospice, if possible, will only strengthen the support available to the patient, the family, and you, the primary care physician. In the end, there is much that we have to offer a dying patient. Efforts should not stop because the illness cannot be cured. So much can happen to someone in the window of time between terminal diagnosis and death. Making this period one in which a person is as mentally clear, physically comfortable, and symptom free for as long as possible is a goal that is worthy of our efforts.

Introduction

"I'€™m sorry, but there is nothing more that we can do."

Imagine what it must be like to hear those words: so sobering, so isolating, so final, and so untrue. Yet they are spoken and heard far too often in physician offices and hospitals. These words have become a cliche in modern lingo, spoken by movie and TV doctors for dramatic effect. Today, with the advances in palliative care, these words never need to be spoken to a patient. Primary care physicians now realize there is much that can be offered to the patient with advanced disease, and that providing quality and comprehensive care to the dying patient is a skill worth knowing and knowing well.

Accepting death as a natural outcome of illness is antithetical to the way thousands of doctors are trained. Physicians and patients expect physicians to cure and consider death a failure. Pick a physician at any level of training. Chances are that he or she is not only reluctant to speak to a dying patient about death, but is also inaccurate in his/her prognosis. Oftentimes, physicians are overly optimistic about prognoses and patients end up being referred to hospice or palliative care teams much too late. The SUPPORT Study (Study to Understand Prognosis and Preference for Outcomes and Risks of Treatments) revealed that dying patients also experience considerable suffering and are the victims of inappropriate use of medical resources. Many people die long and painful deaths and receive unwanted, invasive medical attention. Some people die in a place where the fear of pain and the loss of control and dignity become a burden to them and their families. It doesn’t have to be this way. The ideal environment would be one in which the patient and family would be able to plan ahead for the death and where the center of control is wrested back from the medical sphere and returned to the patient.

Now more than ever, patients have the chance to spend their dying days cared for by a hospice or palliative care team. These teams attempt to provide a secure environment for the patient where symptoms are expertly managed. Such teams provide medical, emotional and spiritual support to the patient as well as his or her entire family through a comprehensive, interdisciplinary approach to care. Hospice/palliative care teams typically include nurses, home health aides, social workers, pastoral care workers, administrators, and physicians. Satisfaction at the end of life has been positively correlated with hospice, where the emphasis is placed on palliation. However, only about 20% of patients who die in the United States receive hospice care. The admission criterion of a 6-month prognosis or less has been identified as a barrier to hospice referrals. This is in part related to the difficulty in accurately predicting prognosis and in part related to the discomfort surrounding discussing prognosis with patients.

Becoming a physician capable of providing for the needs of a dying person requires accepting the inevitability of death in some circumstances. Prognosis needs to be objectively and accurately assessed and then shared with the patient and patient’s family in a compassionate, clear, and supportive manner. Too often, physicians have inadequate skills to address these conversations. ...

An important aspect of palliative care is establishing the goals of care. Discussions surrounding goals for care should include clear information about treatment choices, including measures to actively support the patient in palliative care. ...

Another important step in becoming a physician who provides comprehensive, quality care for the dying patient is gaining expertise in managing such patients. Recent studies have shown that three out of every four patients dying from cancer experience significant periods of pain. Appropriately and expeditiously managing pain in the dying patient includes the skillful use of opioids in these circumstances. Many articles have been written on managing pain in the dying patient. Several references are provided at the end of this article.

Providing comprehensive care to the dying patient also means that primary care physicians should be familiar with methods of treating distressing symptoms other than pain. These symptoms; dyspnea, anxiety, depression, gastrointestinal symptoms, anorexia/cachexia, delirium and asthenia are a common to the dying experience and are too often inadequately or poorly managed. The remainder of this article will focus on the medical management of these symptoms.


Sun Feb 07, 2010 7:03 pm
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