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OBJECTIVES

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  • Identify unique burdens of vulnerable persons at the end of life.

  • Identify communication barriers to quality care for the dying.

  • Discuss challenges to end-of-life decision making.

  • Identify models of health-care delivery for dying patients.

  • Summarize practice guidelines and suggest other strategies to improve care of the dying patient.

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INTRODUCTION

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Mr. Smith, a 74-year-old man with an 8th grade education, presents to the emergency department (ED) with profound shortness of breath and generalized weakness. In the ED, he complains of fatigue and significant weight loss over the past 4 months. He does not have a primary care provider and his father, who was his last living relative, died about 6 months ago. He has a small circle of friends, and although he currently has a stable living situation in a boarding house, he has had bouts of homelessness in the past. His past medical history is significant only for schizophrenia.

He is found to have a right-sided pleural effusion and lytic lesions of several ribs. He is informed of the findings and the need to rule out a serious life-threatening condition such as metastatic cancer. He refuses admission to the hospital, further workup, and declines referral or further discussion. He leaves the ED against medical advice.

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Facing one’s own mortality is one of life’s greatest challenges, one that makes all people vulnerable. Despite the successes of the hospice movement and advances in the field of palliative care, physical and existential sufferings are still common at the end of life. At the lowest estimates, every year about 20 million people worldwide need end-of-life palliative care, including over a million children.1 Even in North America, Europe, and Australia, with developed palliative care programs, there are many unmet needs.1 Access to palliative care is considered by many to be a basic human right.2 The UN Committee on Economic, Social and Cultural Rights stresses the importance of providing “attention and care for chronically and terminally ill persons, sparing them avoidable pain and enabling them to die with dignity.”3

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The palliative care movement also considers dying pain free and with dignity a basic human right. Human rights groups see denying access to pain relief to the dying as tantamount to torture. For people marginalized by social or economic circumstances, illiteracy, or cultural or language barriers, suffering may be compounded by additional burdens. As a result, end-of-life care goals and priorities for marginalized patients extend beyond clinical concerns and may require providers to act as advocates on behalf of social and economic equity.4,5,6 This chapter identifies key issues for the dying patient, focusing on difficulties encountered in medical discussions and in decision making in the face of death in marginalized patients in the United States. Various end-of-life health-care delivery models are summarized along with practice guidelines and other strategies that may improve the quality of life for ...

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