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  arrow  Quill, T. E.
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MEDICAL WRITINGS

Palliative Care Textbooks Come of Age

right arrow Timothy E. Quill, MD, and J. Andrew Billings, MD

1 October 1998 | Volume 129 Issue 7 | Pages 590-594


At last, good care of the dying is on the American agenda. One can hardly pick up a newspaper, magazine, or medical journal without finding an article devoted to some aspect of end-of-life care. Many major medical organizations have joined the lament-sounded for the past 25 years by the hospice movement-that care of the dying is woefully inadequate, and they have challenged us to improve our palliative care practices [1-8]. Hospice programs have shown us what good care looks like, but these model programs have largely been restricted to patients with cancer who are expected to live for 6 months or less; these patients are usually in their last weeks of life, accept that they are dying, agree to forego "aggressive" treatment, and have caregivers at home.

New systems of care are needed for severely ill patients with less certain prognoses, for those who desire to continue disease-oriented treatments, and for those who lack access because of insurance barriers or absence of support at home [9]. Such new systems would extend palliative care to more patients with cancer as well as to dying persons with dementia, congestive heart failure, chronic pulmonary diseases, and end-stage liver disease. Indeed, pain and symptom management and psychosocial and spiritual support are relevant to all seriously ill patients, regardless of whether they choose to receive only comfort measures or wish to energetically fight their underlying diseases. Even in the intensive care unit or emergency ward, patients and their families may benefit from hospice-like services.

Most mainstream medical articles written about end-of-life care address the inadequacies of current systems of education and service delivery, management of cancer pain, or "cutting edge" ethical issues surrounding physician-assisted death. Too often, physical pain is equated with human suffering; this falsely suggests that if we close the gap between recommended pain treatment protocols and practice, we will solve the challenging dilemmas faced by dying patients and their families. Outside of specialized hospice and palliative care journals, "bread and butter" articles on how to control common physical symptoms other than pain (such as nausea or shortness of breath), to say nothing of the emotional, existential, spiritual, social, and interpersonal issues faced by dying patients and their families, are difficult to find.

One might hope to come across such basic clinical material in general medical textbooks. Unfortunately, death is rarely mentioned in such tomes, and the physician's imperative to fight the disease to the bitter end by any means possible, including the latest in experimental therapy, is overwhelmingly reinforced. The latest edition of Harrison's Principles of Internal Medicine [10] includes less than a page about end-of-life decision making in its introductory chapter, which overviews medicine's mission. Palliative care, comfort care, and hospice are not included in the index. Of the 256 pages dedicated to oncology and hematology, only 2.5 are devoted to palliative issues. The section on "oncologic emergencies" covers spinal cord compression and the superior vena cava syndrome but discusses no common palliative care emergencies, such as severe dyspnea, accelerating pain, or terminal delirium. The chapters on esophageal cancer, pancreatic cancer, and non-small-cell lung cancer discuss promising experimental therapies but give little or no information about symptom relief. The chapters on congestive heart failure, chronic obstructive lung disease, and dementia are even more deficient.

Perhaps the answers to clinical palliative care questions can be found by directly accessing published materials. Unfortunately, evidence-based literature searches [11] on the treatment of common end-of-life symptoms are frequently disappointing for various reasons. First, researchers interested in end-of-life care face formidable methodologic barriers in performing studies that meet usual scientific standards [12, 13], and many accepted treatments are not supported by evidence from rigorous clinical trials. Nonetheless, limited data from studies of dying persons, evidence extrapolated from studies in other populations, and reports by experienced clinicians constitute the best evidence available to guide treatment. Second, much of the basic data is reported in palliative care journals that, until recently, were not indexed by MEDLINE (Table 1). Therefore, searching medical literature data banks may not identify many important articles. Finally, palliative care journals are often not included in local libraries or in on-line journal collections, so the information they contain may not be accessible enough to affect daily practice.


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Table 1. Palliative Care Journals

 

The second edition of the Oxford Textbook of Palliative Medicine [13] is explicitly designed to bridge this gap. It is a medical textbook, written primarily for physicians and nurses who care for the severely ill and the dying. It is well known to hospice and palliative care specialists but is virtually unknown in general medical circles. It is practical and easy to use and provides specific and detailed recommendations about diagnostic strategies and treatments for common and uncommon problems in patients with advanced terminal disease. It is self-consciously "medical" and replete with basic science information, data from clinical studies, and excellent bibliographic references. Its technical sophistication is reflected in fine presentations on such issues as reduced fraction radiation therapy, laser treatment or stenting, and removal of solitary brain or liver metastatic lesions. The index is extremely well done.

The Oxford Textbook comes from Great Britain, where palliative medicine is formally recognized as a medical specialty. In the United States, the term hospice is better recognized as the dominant organizational arrangement devoted to caring for dying persons. The goal of both palliative medicine and hospice is "achievement of the best quality of life for patients and families" [14]. Both fields share a philosophy of care that focuses on controlling pain and other physical symptoms while attending to the psychological, social, spiritual, and existential suffering of the patient and family [15]. Hospice, as currently defined by legislation in the United States, however, has tended to serve patients with faradvanced disease who accept that they are dying; are expected to live for no more than 6 months; and are willing to forego invasive, disease-driven therapies. It emphasizes multidisciplinary, coordinated care to support the patient and family at home as they work through the dying process, ideally helping them find peace and acceptance before death. In the United States, hospice also implies a capitated Medicare benefit that reinforces supportive care but militates against expensive, intrusive, complicated interventions, including hospitalization. In contrast, palliative medicine has a more medical, data-driven focus and has no attachment to a particular organizational arrangement or reimbursement scheme. It pays more attention to basic science, pathophysiology, and rigorous study design, and it unapologetically incorporates highly technical and invasive approaches when appropriate.

The basic attitudes, skills, and knowledge of palliative medicine presented in the Oxford Textbook should be part of the arsenal of all clinicians. Physicians are trained to consider symptoms as clues to diagnosing a disease process; fewer physicians simultaneously consider symptoms as signs of distress that need to be explored, understood, and, if possible, alleviated. Treatments directed toward easing suffering and improving quality of life have relevance to all patients, not just those who are dying of cancer. Palliative medicine and hospice teach us to address "total pain"-the biomedical, psychosocial, and spiritual aspects of suffering. Of note, once physical suffering is addressed, the energy of the patient and his or her family can be freed to address the nonphysical dimensions of suffering as well as the opportunities for personal growth often associated with dying [16].

Although it conceptually promotes a multidisciplinary team approach to clinical care, the Oxford Textbook squarely addresses the medical aspects of care. Physicians are often the weakest and, paradoxically, the most powerful link in the palliative care team. Critical decision making frequently depends on them, yet their knowledge of the medical aspects of palliative care is often deficient. The Oxford Textbook can help physicians gain the information that they need when trying to address a specific problem. In no other textbook is such solid and extensive information so readily available.

Eleven chapters address pain management, covering topics ranging from basic pathophysiology and assessment to pharmacologic, anesthetic, neurosurgical, and psychosocial approaches to treatment. The chapters are clearly laid out, so specific material relevant to clinical questions can be easily accessed. Detailed discussions are also presented on the assessment and treatment of other common physical symptoms that trouble severely ill patients, such as nausea, vomiting, hiccups, cachexia, shortness of breath, lymphedema, insomnia, and mouth problems, as well as less common, challenging issues, such as tenesmus, pruritus, and bleeding or malodorous wounds. This material is difficult to access or is simply unavailable in usual medical references. The chapter on the psychiatric aspects of palliative care gives practical guidance about the recognition and management of common conditions that affect the severely ill and the dying, including anxiety, depression, and delirium. The chapters devoted to communication skills, family dynamics, bereavement, and professional self-care and self-awareness are solid, but these topics are probably too complex to be fully covered in such a textbook. Additional commendable chapters address quality improvement, research and measurement methods, audit, and education.

This edition of the Oxford Textbook has several important additions that its predecessor lacked. Chapters on the palliative care issues of children and their families have been expanded and improved, and new chapters address the care of patients with AIDS. The chapters on religion, spirituality, and cultural issues now go beyond a Christian perspective, although they still do not address the possible reasons why relatively small numbers of ethnic minorities participate in hospice programs. A new chapter explores the palliative care of patients in third world countries, where many of the sophisticated treatments presented in the Oxford Textbook are inaccessible.

Significant limitations of the textbook remain. Common terminal diseases other than cancer and AIDS are given little consideration. Admittedly, palliative care for many of the symptoms of diseases other than cancer is similar to that for the symptoms of advanced cancer, but unique clinical features also exist. The care of persons with advanced dementia is given only a few lines in the context of diagnosing and treating an underlying delirium. Similarly, the palliative care of those dying of congestive heart failure, chronic pulmonary disease, renal failure, liver failure, and degenerative neurologic disorders is superficial and generally not helpful in addressing the complex dilemmas such patients present. Many persons in the advanced stages of these conditions, although they are highly symptomatic, are still engaged in active treatment of their underlying disease. Some have set limits on resuscitation and others have not, but all have a strong interest in improving their quality of life and are therefore candidates for palliative care. Because these illnesses are among the most common causes of death in western countries, one hopes that the next version of the textbook will better address the palliative care dilemmas faced by patients with diseases other than cancer. Palliative care also has an important role in the emergency ward and the intensive care unit, but care in these sites is not discussed.

The chapter on ethics gives a fine overview of relevant issues surrounding confidentiality, competency, research, and resource allocation. It argues strongly in favor of respecting patient choice and self-determination on the question of discontinuing life supports, but it then argues against respecting patient requests when they involve physician-assisted suicide and voluntary active euthanasia, largely because of "slippery slope" concerns. Why skilled clinicians are able to exclude inadequate palliative care, treatable depression, and adverse social pressures as considerations when life support is being stopped but are unable to do so when such an option is unavailable for hastening death is not at all clear. The argument is made that terminal sedation can provide an escape for the tough cases, but this practice is not uniformly available and is much more ethically and clinically complex than is typically portrayed [17, 18]. Readers will have to reach their own conclusions about the quality and balance of these arguments.

Finally, the main strength of the Oxford Textbook is also one of its limitations. The book is a large medical textbook filled with highly specific information about the diagnosis and treatment of a broad array of palliative care problems. It speaks mainly to the left brain, where knowledge about what is possible in terms of symptom management is most deficient. Some readers will want less information and more clinical guidance; others will seek a more personal, emotional, or spiritual perspective on care of the dying.

The Oxford Textbook is also too dense and long to be read cover to cover. Several excellent smaller books give a more practical overview of basic palliative care strategies and techniques [19-23]. The Handbook of Palliative Care in Cancer, by Waller and Caroline, is the most practical, intelligent, consistently useful text for practicing physicians that is now readily available in the United States [19]. It contains brief discussions of the causes of and differential diagnosis for a wide array of clinical problems, and it gives concise guidelines for management, including detailed advice about pharmacologic approaches. The new edition of Introducing Palliative Care [20], by Twycross, gives excellent information tailored to meet the needs of an advanced clinical student or house officer. Other fine texts from Great Britain [21, 22] and Australia [23] have not been easily obtainable in medical bookstores in the United States but deserve a wider audience. Although they do not provide the clinical depth and breadth supplied by the Oxford Textbook, these affordable paperbacks offer sufficient information to address most common palliative care problems faced by students, house officers, and generalists.

Also worthy of mention is the UNIPAC series from the American Academy of Hospice and Palliative Medicine, a set of six self-study guides on key aspects of end-of-life care, including pain, nonpain symptoms, ethics, and psychological and spiritual suffering [24]. These booklets feature an advanced educational format; they begin with a pretest and behavioral objectives, which are followed by readily understandable text, highlighting of key points, case discussions, a post-test, and references. Such a format is more likely to help a beginning palliative care clinician than will reading through one of the textbooks mentioned above. Unfortunately, the pedagogical sophistication of this series is not always matched by the clinical content of the booklets. Some of the true-false questions are unduly simplified or even inaccurate, and occasional overly facile generalizations in the text, although they make the material easily accessible and relatively uncomplicated for beginners, will seem annoyingly shallow or naive to more advanced or critical learners. Clinicians and teachers who seek self-directed, case-driven educational formats will appreciate Palliative Medicine: A Case-Based Manual [25], a series of clinical descriptions of common end-of-life problems accompanied by discussions that illustrate the basic principles of palliative medicine.

On a more ambitious scale, Berger and colleagues have edited Principles and Practice of Supportive Oncology [26], the first U.S. textbook aspiring to provide a comprehensive reference comparable to the Oxford Textbook. This book shows great promise as a guide to end-stage cancer care and provides thoughtful, well-written, detailed discussions on common symptoms, therapeutic interventions, and psychosocial issues in advanced cancer. Compared with most palliative care textbooks, Principles and Practice of Supportive Oncology reads more like a conventional medical textbook with a predilection toward technical intervention. It is less informed by the hospice perspective that emphasizes home care, simplicity, acknowledgment of terminality, toleration of helplessness, and a preference for noninvasive approaches. It is not as comprehensive or user-friendly as the Oxford Textbook, nor is it as practical as some of the shorter texts. The index is disappointing, and finding specific diagnostic and treatment strategies is difficult. Yet Principles and Practice of Supportive Oncology covers some highly sophisticated topics in cancer care even better than the Oxford Textbook does, and it might be favored by an oncologist rather than a generalist or palliative care practitioner.

Most palliative care textbooks, including the Oxford Textbook, do not speak to the heart, nor do they give an adequate sense of the range of psychological, spiritual, social, and existential suffering or the opportunities for personal growth and healing that dying presents. These issues are probably better addressed through clinical narratives [27-29] and books on suffering [30]; the existential [31], spiritual or religious [32], and psychological [33, 34] domains of illness; communication [35]; and the stress of professional work [36]. But for clinicians looking to answer a specific palliative care question, the Oxford Textbook is an invaluable resource. Symptom management is as central as disease management to the core mission of medicine; thus, this text should be within reach of every clinician who cares for severely ill patients and should be available in any medical or training program library. If our mission in medicine truly is "to cure sometimes, to relieve often, and to comfort always," we ought to know how to access and deliver state-of-the-art palliative care as exemplified in the Oxford Textbook of Palliative Medicine.


Author and Article Information
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University of Rochester School of Medicine and Dentistry; Rochester, NY 14607 (Quill)
Harvard Medical School; Boston, MA 02114 (Billings)
Grant Support: Dr. Billings is supported by National Cancer Institute grant R225CA 66818-01 and the Faculty Scholars Program of the Open Society Institute Project on Death in America.
Requests for Reprints: Timothy E. Quill, MD, Department of Medicine, The Genesee Hospital, 224 Alexander Street, Rochester, NY 14607.
Current Author Addresses: Dr. Quill: Department of Medicine, The Genesee Hospital, 224 Alexander Street, Rochester, NY 14607. Dr. Billings: Palliative Care Service, Massachusetts General Hospital, FND 600, 55 Fruit Street, Boston, MA 02114.


References
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1. Field MJ, Cassel CK, eds. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Pr; 1997.

2. Cohen JJ. Dying patients need better doctoring. Acad Med. 1997; 72:704.

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32. Speck PW. Being There-Pastoral Care in Times of Illness. London: Society for Promoting Christian Knowledge; 1988.

33. Kubler-Ross E. On Death and Dying. New York: Macmillan; 1969.

34. Weisman AD. Coping with Cancer. New York: McGraw-Hill; 1979.

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36. Remen R. Kitchen Table Wisdom: Stories That Heal. New York: Riverhead Books; 1996.


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