Palliative Care by the Surgeon: How to do it
American College of Surgeons, 2001 Clinical Congress
October 10, 2001
Books
The Oxford Textbook of Palliative Medicine, 2ndEd. Doyle D., Hanks G., MacDonald, N. Oxford University Press. 1998.
This textbook is to palliative medicine what Schwartz's Principles of Surgery is to surgery. It contains contributions from recognized leaders in the field from a world-wide distribution. A must for anyone with serious interest in palliative care.
Palliative Medicine: A case based manual. MacDonald N., ed. Oxford University Press. Oxford. 1998.
A selection of clinical cases based on clinical problems commonly encountered in end of life care edited by Neil MacDonald, Professor of Oncology at McGill University who has encouraged surgeons in the U.S. and Canada to develop the concept of palliative care in surgical practice and research. Most chapters address specific physical symptoms and syndromes, though some address issues such as communication, social impact of illness, and bereavement.
The Surgeon and Palliative Care. Dunn G., (ed.) The Surgical Oncology Clinics of North America. W.B. Saunders. Jan. 2001.
This volume was written to bring the worlds of surgery and palliative medicine closer together. It was also intended to provide surgeons an opportunity to find their own voice in palliative care recognizing that consensus will be a matter of ongoing effort.
The volume contains chapters written by several of today's and former ACS Symposia panelists and commentators. Consider it as both a reference book and a reference point for the philosophy and history standing behind today's symposium.
Chronic illness, rehabilitation and terminal care, in, Clinical Surgery in General. Kirk, et al. (eds.). RCS Course Manual., 3rd Edition. Churchill-Livingstone. Edinburgh. 1999.
A concise synopsis of end-of-life care, its principles, and techniques written by two consultants in palliative medicine for the Royal College of Surgeon's training manual. This chapter would make an excellent model for the minimum standard of instruction on this topic during surgical training in the U.S.
Management of Cancer Pain. Clinical Practice Guideline No.9 AHCPR Publication No. 94-0592. Jacox A et al. March 1994.
U.S. Department of Health Clinical Practice Guidelines for management of cancer pain. Useful tables and extensive list of references.
How to Break Bad News, Buckman R. Johns Hopkins University Press. Baltimore.1992.
By now, this book has become a classic work in clinical communication, the pediment upon which all palliative care rests. A synopsis of the author's stepwise approach to communication is available as a laminated booklet that fits in a shirt pocket.
Hospice and Palliative Medicine. Core Curriculum and Review Syllabus. AAHPM. Schonwetter RS (ed). Kendall-Hunt Publishing Co. Dubuque, Iowa. 1998.
This is curriculum and syllabus for end-of-life care published by the American Academy of Hospice and Palliative Medicine with interesting introductory historical information about the development of hospice philosophy and subsequently palliative care.
UNIPAC Series. The American Academy of Hospice and Palliative Medicine's Self Study Training Program. Six booklets. Order information via the Web : aahpm@aahpm.org/unipac's.htm
These are very user-friendly self-education manuals with handy, detachable charts. The topics covered include: (1)Hospice/Palliative Medicine approach to end-of-life care,(2) Alleviating psychological and spiritual pain in the terminally ill, (3)Assessment and treatment of pain in the terminally ill, (4) Management of selected non-pain symptoms in the terminally ill, (5) and (6) Ethical and legal decision making when caring for the terminally ill. Each UNIPAC is designated for 3 credit hours in Category 1 of the Physician's Recognition Award of the AMA.
Improving End-of-Life Care. A resource guide for physician education. (2nd ed.) Weissman D and Ambuel B. Medical College of Wisconsin Research Foundation, Inc. Milwaukee. 2000.
A teaching syllabus for physician education that has undergone rigorous testing by David Weissman, a leader in palliative medicine education and a member of the Surgeons P. It represents an excellent standard of knowledge that could be applied to surgical residency curricula.
Caring for the Dying: Identification and Promotion of Physician Competency-Education Resource Document. American Board of Internal Medicine Committee on Evaluation of Clinical Competence. Philadelphia. 1996.
Landmark publication by the ABIM consisting of an educational resource document and a book of personal narratives. Dr. Kathleen Foley, one of this morning's panelists, was one of the Special Contributors to this project. A similar production by the American Board of Surgery would be welcome.
Surgical Ethics. McCullough LB, Jones JW, and Brody BA (eds.) Oxford University Press. New York. 1998.
This book on surgical ethics contains a chapter written by Robert Milch, one of this morning's panelists, about ethical questions relating to surgical care in patients with terminal illness.
Cancer Pain Management Simpson KH and Budd K (eds.) Oxford University Press. Oxford. 2000.
This book presents a comprehensive approach to cancer pain management using non-pharmacological approaches including a chapter on selected surgical approaches. By Dr. Geoffrey Dunn a member of the Surgeons Palliative Care Workgroup.
Symptom Management Algorithms. A Handbook for Palliative Care. 2nd Ed. Wrede-Solomon L. Intellicard. Yakima, Wash. 1999. Orders: www.intelli-card.com
This is as handy as the Washington Manual is for internal medicine during daily palliative medicine practice. It was written by a physician working in a region known for its sophistication in hospice care. All nurses in my program receive a copy when they join us.
Palliative Care Secrets. Joishy S, (ed). Hanley and Belfus, Inc. Philadelphia.1999.
This book from the "Secrets" series is a handy reference paperback for day to day problems of palliative care written in a question and answer format. The editor, a medical oncologist, has had extensive palliative care experience in England and the Cleveland Clinic. Excellent chapters by many of the supportive disciplines and services such as pharmacy and spiritual care.
Handbook of Palliative Care in Cancer, Waller A. and Caroline NL. Butterworth-Heinemann Pub., 1996.
A concise, pragmatic, easy to carry collection of clinical distillations, "pearls", and how-to's.
Physician's Guide to End-of-Life Care. Snyder L. and Quill TE. American College of Physician's. Philadelphia. 2001.
Just out, this practical book using case studies addresses topics that include communication, goal setting in palliative care, evidence-based approaches to pain, depression, delirium, intractable suffering, legal and financial issues, and quality measurement. The material was developed by the ACP-American Society of Internal Medicine End-of-life Care Consensus Panel.
Dying Well . Byock I. Riverhead Books, 1997.
A popular book written by one of the most eloquent and experienced exponents of hospice and palliative care. He was one of the first in palliative medicine in the US to recognize the potential contribution that could be made by surgeons and is a member of the Surgeons Palliative Care Workgroup.
How We Die: Reflections on Life's Final Chapter. Nuland SB. Alfred A. Knopf, New York.1994.
Is it a coincidence that the Department of Surgery at Yale has had so many eloquent voices on end of life issues, holistic medicine, and medical ethics? Nuland, Siegel, Krizek, ,and McKhann all with current or previous Yale affiliations have taken widely varying positions on some of these topics and in some instances reached out far beyond the world of surgery. This book is an excellent example and it should reassure any surgeon of their value at the bedside of the dying.
Space, Time, and Medicine .Dossey L. New Science Library. Shambhala. Boston and London. 1985.
This fascinating book written by an internist with a background in physics offers a lucid description of the current conceptual crisis of medical science based on solid analysis of the Newtonian model of reality, the underpinning of our current scientific approach. He presents a new paradigm of health reflecting the quantum model of reality with implications for all forms of therapeutics. The necessity of hospice and later, palliative medicine, was created by the failure of the scientific method to provide a complete model of health for individuals with advanced and incurable disease. It is intriguing to consider what the surgical expression of the "quantum" conceptual model would be.
Articles, Chapters
American College of Surgeons. Principles of Care at End of Life. Bull American Coll Surg , 83 (4): 46, 1998.
These principles were endorsed by the Board of Regents in February 1998. A sheet with these principles will accompany today's handouts.
Cassel C, Foley K. Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine. Report sponsored by The Milbank Memorial Fund. December, 1999. http://www.milbank.org/
The American College of Surgeons is among those organizations represented in the Consensus. The co-author of the report, Dr. Foley, was a panelist for last year's Clinical Symposium, Palliative Care by the Surgeon.
Gaisford JC. Palliative surgery. JAMA; 221(1):83-84, 1972.
This short and timeless article is a wonderful summary of the spirit of palliative care in surgery. Of particular interest was the author's identification of spiritual needs in the context of surgery for advanced disease and the importance of collegiality with individual's entrusted with spiritual care.
Dunphey JE. Annual discourse- On caring for the patient with cancer. N Eng J Med. 295:313-319,1976.
This landmark address by a giant in surgery was cited by Ira Byock as a reason why he was so optimistic that surgery would ultimately endorse and enrich palliative care. The article is impressive not only because of what it says and but also because of who said it.
Sugarbaker PH, Barofsky I, Rosenberg SA, et al. Quality of life assessment of patients in extremity sarcoma trials. Surgery, 91(1): 17-23, 1982.
An early article attempting to assess quality of life outcomes following surgical attempts at cure/palliation. Insightful and prescient, the authors noted that even asking the question about the impact of treatment on an individual's quality of life did something to humanize the investigators themselves.
Milch RA, Dunn GP. The surgeon and palliative care. Bull American Coll Surg, 82: 15-18, 1997.
This article written by two former general surgeons now in full time hospice and palliative care practice was a "shot across the bow" to heighten awareness of palliative and end-of-life care by the surgical community.
Dunn G P: Surgery and Palliative Medicine: New Horizons. Journal of Palliative Medicine. 1: 215-219, 1998.
This article was written to alert non-surgeons in palliative care to the enormous opportunities for surgery and surgeons to assist in their work.
Nelson J. Saving lives and saving deaths. Ann Int Med. 130: 776-777,1999.
This provocatively titled and written article by a medical intensivist (formerly a lawyer) argues for the appropriateness of palliative care to all patients with critical illness regardless of expected outcome.
Spencer F. The vital role in medicine of commitment to the patient. Bull American Coll Surg, 75 (11): 6-19, 1990.
Among the highly memorable College Convocation addresses, reminiscent in spirit to Dunphey's Massachusetts Medical address of 1976, this speech reminds us the principles of medical humanism remain the center of gravity for the compassionate surgeon.
Regier H. Family divided in requests for father's terminal care. (Based on coverage of the ACS annual meeting). General Surgery News, June 1998.
Coverage of a symposium at the 1997 Congress during which physician-assisted suicide was debated and discussed by some of today's panelists. Last year's and today's symposia were conceived as a necessary sequels to that discussion.
Angelos P. Annotated bibliography of ethics in surgery. Journal of the American College of Surgeons. 188(5):538-44, 1999 May.
This article written by a rising star in surgical letters gives a comprehensive view of medical ethics in surgery including references to palliative care. Dr. Angelos is a member of the Surgeon's Palliative Care Workgroup.
Walsh D et al. Symptom control in advanced cancer: Important drugs and routes of administration. Seminars in Oncology, Vol. 27, No.1 (February), 2000: pp 69-83.
A useful pharmacopoeia for palliative care written by an early supporter of the concept of surgical palliative care.
Nelson KA. The dying cancer patient. Seminars in Oncology, Vol. 27, No. 1 (February), 2000: pp84-89.
This is an extremely useful article with helpful and practical tables written by members of the Department of Palliative medicine at the Cleveland clinic. The authors point out that the most critical aspect of care is for the physician to include "dying" in their differential diagnosis. The article addresses communication,, family and setting preparation, symptom control, spiritual issues, comfort care orders, and bereavement.
Moulin DE. Neuropathic Pain.. In Topics in Palliative Care, vol. 2, Bruera E and Portenoy R, ed.; Oxford University Press;New York; 1998
A useful chapter on a challenging syndrome in qn excellent series of books on palliative care topics. This is one of the references for this morning's presentation on neuropathic pain.
Lipman AG and Gauthier ME. Pharmacotherapy of Pain, in Topics in Palliative Care, vol. 1, Bruera E and Portenoy R, ed.; Oxford University Press; New York; 1997
Excellent introduction to pain management in a volume that has chapters on management of delirium and palliative management of mechanical bowel obstruction
Gross SC, Cairns BA, and Baker CC. Addressing end-of-life issues in the surgical intensive care unit-Practical and ethical guidelines for residents and surgeons. Contemporary Surgery, October 2000. Vol. 56. No. 10.
Compelling evidence that surgeons can competently manage the most challenging aspect of end-of-life care in the most challenging of environments. A stepwise, practical approach to the heart of palliative care: communication.
Easson AM. Crosby JA. Librach SL. Discussion of death and dying in surgical textbooks. American Journal of Surgery. 182(1):34-9, 2001 Jul.
A very revealing analysis. Dr. Easson is an oncologic surgeon practicing in Toronto and a member of Surgeons Palliative Care Workgroup.
McCahill LE, Krouse R, Juarez G, Ferrell B, Chu DZJ, and Wagman LD. Surgical decision making in palliative care - a survey of cancer surgeons. In press, Annals of Surgical Oncology, Dec. 2001.
A large survey of oncologic surgeons demonstrating the frequency of "palliative" Surgery. This study suggested the need for a more standardized definition of the term, "palliative surgery". Both Dr. McCahill and Dr. Krouse are members of the Surgeons Palliative Care Workgroup.
Krouse RS. Nelson RA. Ferrell BR. Grube B. Juarez G. Wagman LD. Chu DZ. Surgical palliation at a cancer center: incidence and outcomes. Archives of Surgery. 136(7):773-8, 2001 Jul.
Pioneering work in the more recent conceptualization of palliative surgery.
Programs:
EPEC : Education of Physicians on End-of-Life Care. A Robert Wood Johnson Foundation funded project of the American Medical Association.
This physician category I CME course is offered in a variety of presentation formats on an ongoing basis. See Website: www.epec.net
Websites:
These addresses come from a website directory compiled by the AMA's EPEC program:
American Academy of Hospice and Palliative Medicine: http://www.aahpm.org
AAHPM is an organization for physicians who are committed to furthering and fostering the practice of hospice/palliative care for the terminally ill and their families.
American Academy of Pain Management: http://www.aapainmanage.org
This resource provides the names of credentialled pain practitioners and pain management programs by zip code; offers direct access to the National Pain Data Bank for outcome measurement; provides links to other pain-related sites; has information about the agenda for the annual clinical conference in September of each year.
ABCD - Americans for Better Care of the Dying: http://www.abcd-caring.com
ABCD is anon-profit coalition of citizens and professionals united to ensure that public policy addresses the needs of individuals and families coping with a fatal illness.
Cancer Net: http://cancernet.nci.nih.gov/
Cancer Net is a wide range of accurate ,credible cancer information from the National Cancer Institute. The comprehensive cancer database includes summaries on cancer treatment, screening, prevention, and supportive care as well as information on ongoing clinical trials.
Caregiver Survival Network: http://www.caregiver911.com/
Caregiving is becoming a significant issue for many people. This resource provides help to others to cope with the demands of caregiving.
Dying Well: http://www.dyingwell.com/
Defining Wellness through the 'End of Life' : Resources for patients and families facing life-limiting illness.
Elizabeth Kubler-Ross, M.D., "On Death and Dying": http://doubleclickd.com//kubler.html
Elizabeth Kubler-Ross, M.D. is widely recognized as one of the foremost authorities in the field of death and dying. "On Death and Dying", is required reading in most major medical and nursing schools and graduate schools of psychology and theology.
International Association of the Study of Pain: http://www.pslgroup.com/dg/1ff02.html
IASP is open to scientists, physicians, dentists, psychologists, nurses, physical therapists, And other health professionals actively engaged in pain research and to those who have an interest in the treatment of pain.
Last Acts: http://www.lastacts.org
Last Acts is a call-to-action campaign dedicated to improving end-of-life care through the sharing of ideas and solutions by professional care givers, institutions, and individuals.
Medical College of Wisconsin Palliative Care Program: http://www.mcw.edu/pallmed/
This program is committed to improving care for the dying in America through the development, implementation, and dissemination of innovative education and clinical care programs.
National Hospice Organization: http://www.nho.org/
Founded in 1978, the National Hospice Organization is the oldest and largest nonprofit public benefit organization devoted exclusively to hospice care. NHO is dedicated to promoting and maintaining quality care for terminally ill persons and their families, and to making hospice an integral part of the U.S. health care system.
Oregon Health Sciences University Center for Ethics in Health Care: http://www.ohsu.edu/ethics/
The Center for Ethics combines the perspectives of health professionals, patients, and families to improve teaching, research, and clinical consultation about ethical issues in patient care and health policy.
UB Center for Clinical Ethics and Humanities in Health Care: http://wings.buffalo.edu/faculty/research/bioehics/index.html
The Center for Clinical Ethics and Humanities in Health Care is an interdisciplinary academic center which draws upon a wide range of individuals from the School of Medicine and Biomedical Sciences as well as various health care and academic institutions.
U.S. Palliative Medicine Fellowship Programs: http://www.capcmssm.org/fellowship.html
Existing and planned, as of August 2000, listed in chronological order. This fellowship directory will also be posted to and updated on the EPERC web site.
UW Pain and Policy Studies Group: http://www.medsch.wisc.edu/painpolicy
The UW Pain and Policy Studies Group is the study of public policy in relation to pain management, identifying and addressing the barriers to medical use of opioid analgesics.
The following addresses come from a directory compiled by J. Andrew Billings, M.D., Massachusetts General Hospital Palliative Care service, August, 2000.
The author invites any additions or changes to the directory, as well as comments. Please forward these to either Andy Billings,MD at jbillings@partners.org, or David Weissman, MD, at EPERC dweissmn@hemonc.mcw.edu
American Hospital Association Circle of Life Award: http://www.aha.org/circleoflife
Presented annually to recognize outstanding initiatives to improve end-of-life care.
Community-State Partnerships to Improve End-of-Life Care Midwest Bioethics Center: http://www.midbio.org
Provides grants to support statewide coalitions composed of citizens, health care professionals, educators and policymakers that identify problems, make recommendations and build public support for practical policies, regulations and guidelines to improve care of the dying. Publishes State Initiatives in End-of-Life Care.
Education for Physicians on End-of-Life Care (EPEC): http://www.epec.net
Educates physicians, through its core curriculum, on essential clinical competencies required to provide quality end-of-life care.
End-of-Life Nursing Education Consortium (ELNEC): http://www.aacn.nche.edu/elnec
A comprehensive national education program to develop a core of expert nursing educators and to coordinate national nursing efforts in end-of-life care.
End-of-Life Physician Education Resource Center (EPERC): http://www.eperc.mcw.edu
Assists physician educators and others in locating high-quality, peer-reviewed training materials. Visitors to the site can search for educational materials indexed by end-of-life care topic areas and educational formats.
Growth House: Guide to Death, Dying, Grief, Bereavement and End-of-Life Resources: http://www.growthhouse.org
Search engine offers access to the Internet's most comprehensive collection of reviewed resources for end-of-life care.
Innovations in End-of-Life Care: http://www.edc.org/lastacts
On-line journal features peer-reviewed examples of promising practices in end-of-life care. Each bimonthly issue focuses on a different theme.
On Our Own Terms: Moyers on Dying: http://www.thirteen.org/onourownterms
Supports the On Our Own Terms outreach campaign with various tools, articles, personal stories, audio and video clips, and interactive opportunities.
Partnership for Caring: America's Voices for the Dying: http://www.partnershipforcaring.org
National non-profit organization devoted to raising consumer expectations and demand for excellent end-of-life care. Offers resources for talking about end-of-life choices, the process of health care agency and state-specific advance directives.
Project on Death in America: http://www.soros.org/death
Dedicated to understanding and transforming the culture and experience of
Promoting Excellence in End-of-Life Care: http://www.promotingexcellence.org
Manages 22 grant-funded projects designed to demonstrate excellence in end-of-life care in diverse institutional settings. The project is a National Program Office of The Robert Wood Johnson Foundation, headquartered in Missoula, Montana.
The RAND Center to Improve Care of the Dying: http://www.rand.org/organization/health/dying.html
Conducts research designed to improve a system of care in which persons with serious and eventually fatal chronic illness can live comfortably and meaningfully until death.
Supportive Care of the Dying: http://www.careofdying.org
Develops and tests innovative projects with individuals and organizations working to improve delivery of care to those facing the end of life. Videos and facilitator guides are available to help improve physician communication with patients and families.
Toolkit of Instruments to Measure Care at the End of Life: http://www.chcr.brown.edu/pcoc/toolkit.htm
An authoritative bibliography of instruments to measure the quality of care and quality of life for dying patients and their families.
U.S. Palliative Medicine Fellowship Programs: http://www.capcmssm.org/fellowship.html
Existing and planned, as of August 2000, listed in chronological order. This fellowship directory will also be posted to and updated on the EPERC web site.
Annotated bibliography compiled by:
Geoffrey P. Dunn, MD, FACS gpdunn@erie.net
Robert A. Milch, MD rmilch@palliativecare.com
