Keeping the mission Balfour M. Mount, CM, OQ, MD, FRCS(C)
Thisarticle was adaptedfromapresentation delivered May 1, 1992, as the Keynote Ad~ dressat the Twelfth Annual Interdisciplinary Seminar and Meeting of the New York Hospice Association, Albany, New York
Unlike many fields of endeavour where the original concepts have been lostin thesands of time, the foundational thinking that gave rise to the modem hospice movement has been carefully documented and is readily available. Beginning with ‘Dying of Cancer’ in volume 56(2) ofthe St. Thomas’s Hospital Gazette in 1957, Cicely Saunders has produced a remarkable library of lucid writings that provides a detailed analysis of the needs of the dying and their families, and proposes a comprehensive system ofcare that has become knownto the world as ‘Hospice.’ The philosophy underlying hospice was perhaps most succinctly stated in 1948 in the plea of a young dying patient, David Tasma, who told Cicely, “I only want what is in your mind and in your heart.” Significantly, this agnostic Polish Jew from the Warsaw Balfour M. Mount, CM, OQ, MD, FRCS(C), is Professor of Surgery and Director of Palliative Care Medicine, McGill University, Montreal, Quebec, Canada.
Ghetto, who was to become an important catalystfor Cicely’s thinking, feelings and subsequent actions, had given voice to the twin pillars of hospice care. The dying need the friendship of the heart with its caring, acceptance, vulnerability and reciprocity. They also need the skills ofthe mind embodied in competent medical care. Neither alone is sufficient.1 Two seminal papers, ‘The Need’ and ‘The Scheme’ were written by Cicely in June 1959.2 While later revisions were to extend the net of hospice concern to include teaching, research, and an emphasis on home care, these early documents focused on the need for an inpatient ‘Home.’ They provided evidence of the attention to detail, clarity of analysis, and the blending of a deeply rooted spirituality and excellence in medical care that was to characterize St. Christopher’s Hospice.3 From the first, Cicely was very aware of both the great potential of hospice and her colleagues’ differences in perception. In an address to the British Medical Association at a time when ‘fighting for life to the very end’ was accepted by many as the mandate, Cicely commented, “But to talk of accepting death when its approach has
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become inevitable is not mere resignation or feeble submission on the partof the patient, nor is it defeatism or neglect on the part of the doctor. Our work then is toalter the character of this inevitable process so that it is not seen as a defeat of living but as a positive achievement in dying; an intensely individual achievement for the patient.’4 Iron-clad determination, a remarkable memory, an alert mind and a sparkling wit have served Cicely well. Her capacity to listen, really listen, to what patients were saying became the womb out of which the insights of hospice were born. In 1963 a patient at St. Joseph’s Hospice told Cicely about her pain, “It began in my back, but now it seems as if all of me is wrong. I began to cry for the pills and the injections but I knew that I mustn’t. It began to seem as if all the world was against me, nobody seemed to understand. My husband and son were marvelous, but they were having to stay off work and lose their money. It’s marvelous to begin to feel safe again.” In this sad tale Cicely heard the whole patient and the concept of ‘Total Pain’ was borp the physical pain invading her whole body; the emotional pain of feeling alone; the social and financial pain associated —
The American Journal of Hospice & Palliative Care September/October 1992
with anxiety about her family; the spiritual pain already relieved by admission to St. Joseph’s.4 For Cicely, the absence of further therapy to modify the natural history of the disease and patient or family need define the appropriateness of hospice care, not how many months the patient is expected to live, ability to pay,or the presence of family members who are able to act as caregivers. Cicely would consider the absence of a ‘primary caregiver’ an inconceivable rationale for exclusion from hospice care. Isolation and loneliness in a time of distress, she would argue, make hospice more, not less, imperative. For Cicely, hospice care involves meeting people where they are, irrespective of color, creed, sexual orientation, family status or economic resources. Cicely believes hospice care is physician-intensive. As she likes to say, “It is not a soft option.” It stands on a firm foundation of medical competence. And she commented wryly, “I think starting a hospice with volunteers only is very exciting, as long as one or two of the volunteers are doctors.”5 Reasoned therapy demands careful assessment and accurate diagnosis, which may in turn demand thoughtful investigation. The relevance of investigation is defined by the need for a diagnosis not the cost of the procedure involved. Cicely sees bereavement support as an essential component of hospice that naturally flows out of the family’s place as a central focus of concern. It could never be an optional add-on. What of hospice management? Cicely’s 1990 book, Hospice and Palliative Care: An Interdisciplinary Approach, presents a clear picture of hospice management through the operation of an interdisciplinary team; a team that includes the patient as an active member.6 The goal of management is optimal care. A sense of community is seen as fundamental. In Cicely’s words,
The American Journal of Hospice & Palliative Care September/October 1992
“It is planned that the staff should form a community, united by a strong sense of vocation with a great diversity of outlook in a spirit of freedom.”7 Cicely shares Bruno Betteiheim’s view that, “Community is viable only if it is the outcome of a deep involvement in a purpose which is other than, or above, that of being a community.’8 What of money? Like management, money, in Cicely’s view, is a means to an end and the end is excellence of care. Both visionary and pragmatist, Cicely bid £27,000 for the property that was to become the site for St. Christopher’s, when she had only £500 in the bank. Herability to find large sums ofmoney is the envy of professional fund-raisers. When asked her secret she answered, “Never miss an opportunity to tell the tale; never stop saying thank you.”9 In addition to this simple formula, her biographer Shirley du Boulay, sees four factors as contributors to her enviable track record: • Her ability to deliver to potential donors, with clarity, civility and conviction, a message that is both dramaticand filled with hope. • Her alliance with patients in fund raising, encouraging them to tell their story. • Her personal attitude to money and its purpose. A family friend commented, “She’s always been able to collect money because she has such contempt for it.” For Cicely, money is never more than a means to excellent inpatient and family care; money is never more than the means to an end. • At a deeper level is her faith in a destiny beyond herself that led her to comment, “If we find the pattern we are meant to have, the other things will fol-
low. I really do know that without doubting.”° Recently, I was speaking to Cicely on the telephone and she commented that when I called she had been writing a talk she was about to give to the national body of hospice fund-raisers in the United Kingdom. Hoping to collect a fund-raising pearl I asked her what her message to them would be. “Listen to the patient. Listen to the patient. Listen to the patient,” was her sage reply. Hospice care American style Let us turn our attention now to norms of practice here. American hospice has developed along lines that have diverged significantly from the original model. Patient inclusion criteria that include estimated survival, availability ofa primary caregiver, and ability to pay have arbitrarily rendered ineligible many who are in great need. Volunteers have come to define American hospice. Several years after Potter’s warning in the New England Journal ofMedicine that, “A high order of clinical competence is essential if abuse of the hospice is to be avoided,” voluntarism had, according to Paradis and Usui, come to define not an aspect of American hospice, but the very nature of the thing itself. They state (1987), “The American hospice movement provides anexample of organized voluntary action focusing on changing aspects of the existing health care system.”12 Rather than developing as an integratedpart ofof the health care system as is the proposed European goal13 and the goal in Canada, American hospice came to be seen, in Mors’ words,as, “an alternative system of care.”4 In preparation for this presentation a group of New York State hospice directors were asked to comment on, “the barriers to keeping a balance of mission and management; to keeping the mission uppermost; to meeting mission objectives.” ‘5All responses started
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with “inadequate funding.” Although some did not get beyond that, six listed other problems. While the small, selected nature of the sample precludes generalization,the problems cited may be familiar and of interest. As already noted barriers related to money were most frequently mentioned as the greatest obstacle to keeping the hospice mission. The problem was summed up by one director: “The financial constraints are overwhelming.” Others reflected on the impact of funding constraints: “There is a lack of fmancial ability to provide some of the high tech things thepatients reallyneed.” One respondent linked financial need to inadequate management: “An important factor in our failure to adequately achieve the hospice mission is our unwillingness to face the necessity of becoming more sophisticated managers and set in motion long range plans to raise sufficient charitable funds. There is a counter trend in some unsuccessful agencies to limit services and complain that reimbursement is not adequate. Successful managers are generally able to share power with a community board that has the talents needed to raise money.” Barriers related to mission were also common, including questions about its definition. As one director commented, “Barriers exist within our own attitudes about what is and is not hospice.” Another director noted, “An original vision which was too narrow artificially restricted patient access, program growth and our ability to change. We need to develop a broader view and more flexibility about serving children, serving more noncancer patients, and so forth.” Similarly, “The original mission is narrowly and inflexibly defined. I think of this model as ‘The Gates of Heaven.’ Patients must be just right, families in place, the disease one that the program is comfortable with, etc., etc. Such programs do not grow and over time —
they find themselves threatened by other providers whom they identify as somehow taking unfair advantage.” The same observer continued, “Another aspect of lack of flexibility is to define any new high tech treatment ‘not hospice’ and thus bar its use in all cases, rather than allowing use as appropriate. Part of this is financial, but part is philosophical. Needless to say physicians who insist on this treatment will no longer refer. These decisions are often difficult calls.” The impact of management on mission was also noted. “As the agency grows and founding mothers and fathers are replaced by directors who have been hired from outside of the field, the senseof mission is lost and/or cannot be transmitted to employees.” In some instances specific individuals or attitudes were seen as barriers to meeting the hospice mission. These included the referringphysician: “Continuing barriers are set up by some physicians who are not receptive to a holistic approach to end of life issues.” Also seen as barriers were members of the hospice team. As one director commented, “In the beginning my staff was filled with our vision and mission. Now it’s ‘pay me what I am worth, limit my hours, don’t ask me to take on-call. Don’t put performance measures on me (that’s not hospice), but, treat me like a valued volunteer on the hospice team!’ They want the best of both worlds and feel betrayed if they don’t get it.” Another director noted the importance of unrealistic goals, “Unrealistic expectations of what we can achieve are a problem. The, ‘We’re going to fix everything for everybody,’ syndrome leads to failure and feelings of inadequacy.” Cultural attitudes were also seen to provide problems: “Cultural barriers to acceptance of good symptom control such as ‘The War on Drugs’ can be a stumbling block.”
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Management was directly identified as the problem in a number of observations the hospice directorsmade. There was repeated criticism of management over-regulation, such as: “Hospice has become very rule-oriented. The rules of the organization are transmitted to new employees rather than the mission.” Another commented, “Overregulation is a major problem. Outside pressures keep us focused on picayune details rather than the bigger picture.” In a similar vein a third confessed, “I have to spend my day bean-counting when I should be star-gazing.” Pressures imposed by a system illsuited to meet the hospice mandate were seen as focusing attention away from the original mission. Such pressures included: • “The need to maintain a short length of stay which has us using up all our energy chasing emergencies;” • “Increasingcompetition (oranticipated competition) for patients;” • “The necessity of meeting corporate demands by a parent agency that wants to use the same productivity measures used for other departments.” Others were forced to conclude that keeping the hospice mandate as now defined demanded, “more precise prognostication for non-cancer patients,” and, “a national data base to better understand parameters of hospice utilization trends.” Finally, one director commented on the problems inherent in team functioning, saying: “Some programs talk ‘Team’ with implied implications for egalitarian power sharing and decision making, while in reality those with the power hold on to their turf with a ferocious grasp.” It isn’t too surprising that we are all having problems in reproducing the ex-
The American Journal of Hospice & Palliative Care September/October 1992
ample of ‘balance’ so impressively created by Cicely. At the first International Hospice Conference in India, held last November, the final session looked at “Problems in Hospice Care” and compared mission and management difficulties encountered in East and West. Dr. Robert Pye reports that while the differences initially looked vast, “all the problems we encounter while tinged by a local flavor, are very similar, that is: money/governmentl bureaucracy/getting mainstream medicine to acknowledge us, etc.”6 Reassuring isn’t it? But is this all wecan say? I think not. For there are other messages that are being sent out from every corner of this great land with increasing clarity. Messages about health care delivery that must be acknowledged if this review of mission, money and management isn’t to be simply platitudinous. A New York publishing executive telephoned me regarding some matters of mutual interest. In the course of the conversation she confided, “Our health care system is a nightmare. I could never consider changing my job because ofthe risk of a lapse in insurance coverage. It has become a factor that rules our lives. Everything you have worked forover a lifetime can be wiped out in a few days if a family member gets sick. When I became pregnant I was afraid to tell anyone until I was sure I was covered. When I did see the obstetrician his secretary informed me the initial consultation fee would be $200 up front, and when I saw him he said, ‘I want to clarify our financial contract before we start. My fee to deliver your baby will be $3500, paid in cash, in advance.’ When I told him I had insurance his comment was, ‘That’s your concern. You apply for it. The fee must be paid in advance.” She continued, “A colleague’s teenage sonhas just been foundto have a brain tumor. When he had the first seizure his mother was frantic. When
the ambulance came, they asked if she was insured before agreeing to take him to the hospital.” Health care as a commodity! Like designerjeans and cosmetics. Money no longer a means to an end, but an end in and of itself. Nashville legal aid attorney Gordon Bonnyman recounts’7 the experience of a 24 year-old diabetic construction worker named Terry Takewell whose job carried with it no insurance benefits. With his medical record Terry could not buy an individual health insurance policy at any price. One day after work a neighbor found Terry in poor condition in the trailer where he lived and arranged for him to be taken to theMethodist Hospital in Somerville, Tennessee. The Emergency Room doctor diagnosed acute ketoacidosis and ordered immediate admission. Within the hour, news ofthe admission had reached the acting hospital administrator. Alarmed at the prospect of the young man adding to the already considerable unpaid hospitalbill accrued during previous illness, the hospital official personally went to Terry’s hospital room and escorted him out of the hospital, leaving him propped under a tree in the hospital parking lot. When questioned by the indignant neighbor, hospital officials said that the admissionhad been denied because of the unpaid bills. The neighbortook Terry home to his trailer where he died that night.182° What is the relevance of all of this to our assigned topic this morning? One hospital-chain executive observed, when questioned about his denial of treatment to a dying cancer patient, “General Motors isn’t expected to give away cars. Grocery stores don’t give away food. Why should anyone expect us to give away care to someone who can’t pay for it?”7 Dear colleagues, that Terry Takewell died is a tragedy beyond measure, but a tragedy of even greater
The American Journal of Hospice & Palliative Care September/October 1992
dimensions is found in the myopic comment and closed heart of the hospital executive, and greater still is the tragedy of those of us who have become sufficiently numbed by stories like Takewell’s that another one no longer evokes moral outrage. The recent events in Los Angeles led me to question the validity of a call for moral outrage, and I changed the above text to ‘moral indignation.’ But moral outrage is exactly what is called for, both in response to the acquittal of the four police offers who beat Rodney King, and in response to our own inertia when we hear another Terry Takewell story. The Los Angeles riots were not an indictment of moral outrage. They were an indictment of anarchy and violence the illegitimate children of moral outrage. What both situationsare testimony to, is the need for the true child of moral outrage justice. President Bush’s recent criticism of the Canadian health care system on the heels of your kind invitation for me to examine with you the balance between mission, money and health care management, taken together with the facts, begs us not to mince around issues. Let me be quick to say two things. First, I do not holdup the Canadian health care system as a paragon of perfection. To work in it is to love to hate it. Second, I do not feel comfortable offering these comments, but my minor discomforts can hardly be relevant measured against the scope of the problem and the need to give voice at every opportunity to the ever-increasing torrent of protest from the Americanmiddle class. The facts speak for themselves. Infant mortality rates are considered by the World Health Organization to be one of the most reliable barometers of how well a nation attends to the health needs of its people. The USA ranks 15th among nations according to this criterion. Infant mortality rates among blacks are twice as high as those for —
—
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whites. An African-American infant is less likely to survive to her first birthday than a child in 28 other countries, including Cuba, Singapore and Bulgaria.21 At present, 37 million Americans have no health insurance. That number continues to climb as hyperinflation pushes the cost of insurance above the reach of more and more individuals and employers.2224 A further group, estimated to be at least as large, is officially classified as ‘underinsured,’ that is, their basic health care needs are not covered.25 ‘Dumping’ is the descriptive term applied when hospitals turn away patients who lack insurance and money. Though it is illegal, a 1987 study published in JAMA estimated that 250,000 emergency patients are dumped each year from American hospitals.26 The American Cancer Society reports that cancer survival rates among the uninsured are markedly lower than among those with adequate health coverage.27 In addition to the cost in unmet suffering, the current system is associated with worrying dollar costs. For more than two decades health care costs have inflated at twice the rate of personal incomes.2~29Furthermore, projections for the future by two Washingtonbased advocacy groups, USA Foundation and Citizens Action predict that health spending per person will more than double the 1980 level by the end of the decade.3°As a result, more and more of those in the middle class will become uninsured; the number of public hospitals serving the uninsured will continue to drop; and, under pressure of rising costs, states will continue to cut back on their Medicaid programs, as more than 30 are proposing to do this year.31’32 Analysts note that the brunt of this staggering burden is being borne by those inthe lower socioeconomic class.33 At the same time, commercialized
health care as a consumer product generates significant profits for those at the other end of the economic spectrum. In 1990, the mutual funds that outperformed all others were those which invested exclusively in health care stocks.~In 1989 the average physician earned approximately $155,800;~~ in 1990 $164,000.36 Doctor and hospital bills are a leading cause of bankruptcy in the United States.’7 Is there light at the endof thetunnel? For five reasons I think there is. To begin with, the election of Sen. Harris Wofford in Pennsylvania under the banner of the right to medical care. Second, there is the light being generated by the growing anxiety over access to health care from a middle class already squeezed by recession. Third, health care has become a central issue in the presidential campaign. Fourth, as Watergate demonstrated, your country has a marvelous ability to self-correct that is the envy of the world. When a problem is diagnosed you Americans are pretty good at finding solutions. Fifth, and in my opinion most significantly, there is light because the American health care system contains an intrinsic catalyst for change and healing YOU. You entered hospice to promote change; to bring compassion. There can be no more worthy arena for the use of these gifts than the current need for radical health care reform. But isn’t the cost of health care already too high? One might well ask, ‘If the inflated health care budget is already bankrupting the nation what would happen if we tried to care for the tens of millions of Americans now excluded from the system?’ Bonnyman responds, “In fact, America’s unique institution of commercialized medicine is far more expensive and less efficient than that of other industrialized nations that provide care to all citizens. Dollars presently wasted on a —
bloated health care industry are ample, if redirected, to meet the needs of people now being denied care.”7 Once again the facts are thought-provoking. An estimated 20 percent of US health spending goes into the administration overhead tied to the marketing of thousands of different types of health insurance and their costly associated claims processing bureaucracy.37’38 Hospital costs are inflated by the expenses related to keeping open vacant hospital beds which, in fact, account for more than one third of the 39 national total on any given day. In spite of the existing national glut of hospital beds, competing hospitals continue to build costly new facilities to ‘capture better market share.’4° The padding of insurance claims is generally agreed to be common place, significantly adding to health care costs. What reforms are needed? Effective reform would be characterized by four distinguishing features.’7 • Universality. Basic healthcoverage would have to be extended to all citizens with quality of care independent of ability to pay. • Affordability. Effective cost controls must protect both the individual (against costs related to particular needs such as medications or nursing home care), and the national purse (against spiralling health care inflation). • Accountability. A reformed health care system should be accountable to thepublic with built in incentives that foster primary, preventive and quality care rather than over-useof high-tech invasive medicine. A responsible public with authority for quality control should disarm the potent entrepreneurial legal forces that have been so effective in padding lawyers’ incomes and leading to excessive
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malpractice insurance costs and settlement awards. • Political feasibility. Current band-aid reforms recommended by political leaders out of fear that anything more substantial would not be politically feasible must give way to new definitions of what is possible. Reform will become politically viable only when the people find their moral voice and demand change. There is much to accomplish. Where does one start? The immediate task is to change consciousness, not structures. There are nonebetter equipped to lead in the fight toward consciousness raising than you. For there are none who have experienced more graphically the truth of the observation that the strong need the weak as much as theweak need the strong in the equation of community survival. A new balance in mission, money and management is needed in your health care system. You’re not alone. The secretis, it’s needed in ours as well, and in the system in Great Britain, and on, and on. Many believe that this current ‘recession’ is, in fact, part of a global financial restructuring that has arisen as part of the changing world order. There is an urgent international need for new management answers that will help us ensure economically feasible health care for all as a basic right in each of our countries. We have a vested interest in your success in this health care revolution. Once again we, your international colleagues, look to you for leadership in problem solving. We wish you good luck and God speed.~
References 1. du Boulay 5, Saunders C: The founder of the modern hospice movement. Hodder and Stoughton, London, 1984:172 2. Ibidem:86
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3. Ibidem:90-91 4. Ibidem:174 5. Saunders C: Personal communication, 1978 6. Saunders C: Hospice and palliative care: An interdisciplinary approach. Edward Arnold, London, 1990 7. du Boulay S: ibidem:lOO 8. Bettetheim B: Home for the heart. Thames and Hudson. Cited in du Boulay, ibidem: 135, 1974 9. du Boulay: Ibidem:126 10. Ibidem: 126-127 11. Potter iF: Achallenge for the hospice movement. NEIM, 1980;302:53-55 12. Paradis LF, Usui WM: Hospice volunteers: The impact of personality characteristics on retention and job performance, The Hospice J, 1987 ;3(1):3-30 13. Ahmedza, 5: Invited review for Mor V, Masterson-Allen S. Acomparison ofhospice vs conventional care of the terminally ill cancer patient. Oncology, 1990;July:94-96 14. Mor V, Masterson-Allen5: Acomparison of hospice vs conventional care of the terminally ill cancer patient. Oncology, 1990;July:85-91 15. Selinske C: Personal communication: Results of informal survey of New York State Hospice directors, March 1992 16. Pye R: TheFirst International Hospice Conference in India. West Australia Palliative Care Newsletter, 1991;38:6 17. Bonnyman G: Moral malpractice. Sojourners, 1992;21(3):l2-17 18. Equal access to health care: Patient dumping. A hearing before a subcommittee of the Committee on Government Operations, House of Representations. 100th Congress l987;July 22:14-16 19. Hill ZM: Testimony before the Human Resources and Intergovernmental Relations Subcommittee of the House Committee on Government Operations. l987;22 July: 17 20. The Wall Street Journal, 1988;29 Nov: 1 21. Children’s Defense Fund, The Health of America’s Children: Maternal and Child Health Data Book. Washington DC, l989;18 22. Congress Research Service, Library ofCongress, Health Insurance and the Uninsured: Background data and analysis. Energy and Commerce Committee Print No. 100-X, Washington, DC, 1988 23. U.S. Bipartisan Commission on Comprehensive Health Care (The Pepper Commission), Final Report: A call to action. Washington, DC, 1990:21-23 24. Office of Management and Budget: “Introductory Statement: The Problem of Rising HealthCare Costs,” presented before the Senate
Finance Committee, 1992;16 April:6-8 25. Farley P: National Health Care Expenditures Study: Who are theunderinsured? National Center for Health Services Research, Washington. DC 1984:20 26. Ansell D, Schiff R: Patient dumping: Status, implications, and policy recommendations. JAMA, 1987;257(l 1):1500-1502 27. American Cancer Society: Cancer and the poor: Areportto the Nation, Atlanta GA, 1990:7 28. Peden E, Lee M: Output and inflation components of medical care and other spending changes. Health Care Financing Review, 1991;l4(2):75-81 29. Bipartisan Commission on Comprehensive Health Care (The Pepper Commission), Final Report: A call to action. Washington DC 1990:38
30. Families USA Foundation: The growing threat to the family Budget. Washington, DC, 1991 31. Bonnyman 0: Results of July 1992 survey of the states. Personal communication with Super D. Attorney, The National Health Law Program, Washington, DC 32. Center on Budget and Policy Priorities and theCenter forthe Study ofthe States, The States and the Poor: How budget decisions in 1991 affect low income people. Washington, DC, 1991:31-44 33. U.S. Bipartisan Commission on Comprehensive Health Care (The Pepper Commission), Final Report: A call to action. Washington, DC, 1990:42,43 34. USA Today: How stock funds performed last year, 199l;7 Jan:3B 35. Pope G, Schneider J: Trends in physician income health affairs, 1992;ll(l):181-194 36. Rich S: Washington Post, 21 May 1992 37. Woolhandler 5, Himmelstein D: The deteriorating administrative efficiency of the U.S. Health Care System. NEJM, 1991; 324:1253-1258 38. U.S. General Accounting Office: Canadian Health Insurance: Lessons for the US, GAOIHRD-91-90, Washington, DC, US Govt Printing Off, June 1990 39. American Hospital Association: Hospital Statistics, 1985 edition. Chicago, 111, 1985 40. Ginsburg P. Koretz D: Bed availability and hospital utilization: Estimates of the ‘Roemer Effect.’ Health Care Financing Review, 1983;5(l):87-92 The author gratefully acknowledges the assistance ofGodon Bonnyman,Carol Selinske and Sojourners magazine, without whose collabora~on this paper could not have been written.
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Thisarticle was adaptedfromapresentation delivered May 1, 1992, as the Keynote Ad~ dressat the Twelfth Annual Interdisciplinary Seminar and Meeting of the New York Hospice Association, Albany, New York
Unlike many fields of endeavour where the original concepts have been lostin thesands of time, the foundational thinking that gave rise to the modem hospice movement has been carefully documented and is readily available. Beginning with ‘Dying of Cancer’ in volume 56(2) ofthe St. Thomas’s Hospital Gazette in 1957, Cicely Saunders has produced a remarkable library of lucid writings that provides a detailed analysis of the needs of the dying and their families, and proposes a comprehensive system ofcare that has become knownto the world as ‘Hospice.’ The philosophy underlying hospice was perhaps most succinctly stated in 1948 in the plea of a young dying patient, David Tasma, who told Cicely, “I only want what is in your mind and in your heart.” Significantly, this agnostic Polish Jew from the Warsaw Balfour M. Mount, CM, OQ, MD, FRCS(C), is Professor of Surgery and Director of Palliative Care Medicine, McGill University, Montreal, Quebec, Canada.
Ghetto, who was to become an important catalystfor Cicely’s thinking, feelings and subsequent actions, had given voice to the twin pillars of hospice care. The dying need the friendship of the heart with its caring, acceptance, vulnerability and reciprocity. They also need the skills ofthe mind embodied in competent medical care. Neither alone is sufficient.1 Two seminal papers, ‘The Need’ and ‘The Scheme’ were written by Cicely in June 1959.2 While later revisions were to extend the net of hospice concern to include teaching, research, and an emphasis on home care, these early documents focused on the need for an inpatient ‘Home.’ They provided evidence of the attention to detail, clarity of analysis, and the blending of a deeply rooted spirituality and excellence in medical care that was to characterize St. Christopher’s Hospice.3 From the first, Cicely was very aware of both the great potential of hospice and her colleagues’ differences in perception. In an address to the British Medical Association at a time when ‘fighting for life to the very end’ was accepted by many as the mandate, Cicely commented, “But to talk of accepting death when its approach has
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become inevitable is not mere resignation or feeble submission on the partof the patient, nor is it defeatism or neglect on the part of the doctor. Our work then is toalter the character of this inevitable process so that it is not seen as a defeat of living but as a positive achievement in dying; an intensely individual achievement for the patient.’4 Iron-clad determination, a remarkable memory, an alert mind and a sparkling wit have served Cicely well. Her capacity to listen, really listen, to what patients were saying became the womb out of which the insights of hospice were born. In 1963 a patient at St. Joseph’s Hospice told Cicely about her pain, “It began in my back, but now it seems as if all of me is wrong. I began to cry for the pills and the injections but I knew that I mustn’t. It began to seem as if all the world was against me, nobody seemed to understand. My husband and son were marvelous, but they were having to stay off work and lose their money. It’s marvelous to begin to feel safe again.” In this sad tale Cicely heard the whole patient and the concept of ‘Total Pain’ was borp the physical pain invading her whole body; the emotional pain of feeling alone; the social and financial pain associated —
The American Journal of Hospice & Palliative Care September/October 1992
with anxiety about her family; the spiritual pain already relieved by admission to St. Joseph’s.4 For Cicely, the absence of further therapy to modify the natural history of the disease and patient or family need define the appropriateness of hospice care, not how many months the patient is expected to live, ability to pay,or the presence of family members who are able to act as caregivers. Cicely would consider the absence of a ‘primary caregiver’ an inconceivable rationale for exclusion from hospice care. Isolation and loneliness in a time of distress, she would argue, make hospice more, not less, imperative. For Cicely, hospice care involves meeting people where they are, irrespective of color, creed, sexual orientation, family status or economic resources. Cicely believes hospice care is physician-intensive. As she likes to say, “It is not a soft option.” It stands on a firm foundation of medical competence. And she commented wryly, “I think starting a hospice with volunteers only is very exciting, as long as one or two of the volunteers are doctors.”5 Reasoned therapy demands careful assessment and accurate diagnosis, which may in turn demand thoughtful investigation. The relevance of investigation is defined by the need for a diagnosis not the cost of the procedure involved. Cicely sees bereavement support as an essential component of hospice that naturally flows out of the family’s place as a central focus of concern. It could never be an optional add-on. What of hospice management? Cicely’s 1990 book, Hospice and Palliative Care: An Interdisciplinary Approach, presents a clear picture of hospice management through the operation of an interdisciplinary team; a team that includes the patient as an active member.6 The goal of management is optimal care. A sense of community is seen as fundamental. In Cicely’s words,
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“It is planned that the staff should form a community, united by a strong sense of vocation with a great diversity of outlook in a spirit of freedom.”7 Cicely shares Bruno Betteiheim’s view that, “Community is viable only if it is the outcome of a deep involvement in a purpose which is other than, or above, that of being a community.’8 What of money? Like management, money, in Cicely’s view, is a means to an end and the end is excellence of care. Both visionary and pragmatist, Cicely bid £27,000 for the property that was to become the site for St. Christopher’s, when she had only £500 in the bank. Herability to find large sums ofmoney is the envy of professional fund-raisers. When asked her secret she answered, “Never miss an opportunity to tell the tale; never stop saying thank you.”9 In addition to this simple formula, her biographer Shirley du Boulay, sees four factors as contributors to her enviable track record: • Her ability to deliver to potential donors, with clarity, civility and conviction, a message that is both dramaticand filled with hope. • Her alliance with patients in fund raising, encouraging them to tell their story. • Her personal attitude to money and its purpose. A family friend commented, “She’s always been able to collect money because she has such contempt for it.” For Cicely, money is never more than a means to excellent inpatient and family care; money is never more than the means to an end. • At a deeper level is her faith in a destiny beyond herself that led her to comment, “If we find the pattern we are meant to have, the other things will fol-
low. I really do know that without doubting.”° Recently, I was speaking to Cicely on the telephone and she commented that when I called she had been writing a talk she was about to give to the national body of hospice fund-raisers in the United Kingdom. Hoping to collect a fund-raising pearl I asked her what her message to them would be. “Listen to the patient. Listen to the patient. Listen to the patient,” was her sage reply. Hospice care American style Let us turn our attention now to norms of practice here. American hospice has developed along lines that have diverged significantly from the original model. Patient inclusion criteria that include estimated survival, availability ofa primary caregiver, and ability to pay have arbitrarily rendered ineligible many who are in great need. Volunteers have come to define American hospice. Several years after Potter’s warning in the New England Journal ofMedicine that, “A high order of clinical competence is essential if abuse of the hospice is to be avoided,” voluntarism had, according to Paradis and Usui, come to define not an aspect of American hospice, but the very nature of the thing itself. They state (1987), “The American hospice movement provides anexample of organized voluntary action focusing on changing aspects of the existing health care system.”12 Rather than developing as an integratedpart ofof the health care system as is the proposed European goal13 and the goal in Canada, American hospice came to be seen, in Mors’ words,as, “an alternative system of care.”4 In preparation for this presentation a group of New York State hospice directors were asked to comment on, “the barriers to keeping a balance of mission and management; to keeping the mission uppermost; to meeting mission objectives.” ‘5All responses started
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with “inadequate funding.” Although some did not get beyond that, six listed other problems. While the small, selected nature of the sample precludes generalization,the problems cited may be familiar and of interest. As already noted barriers related to money were most frequently mentioned as the greatest obstacle to keeping the hospice mission. The problem was summed up by one director: “The financial constraints are overwhelming.” Others reflected on the impact of funding constraints: “There is a lack of fmancial ability to provide some of the high tech things thepatients reallyneed.” One respondent linked financial need to inadequate management: “An important factor in our failure to adequately achieve the hospice mission is our unwillingness to face the necessity of becoming more sophisticated managers and set in motion long range plans to raise sufficient charitable funds. There is a counter trend in some unsuccessful agencies to limit services and complain that reimbursement is not adequate. Successful managers are generally able to share power with a community board that has the talents needed to raise money.” Barriers related to mission were also common, including questions about its definition. As one director commented, “Barriers exist within our own attitudes about what is and is not hospice.” Another director noted, “An original vision which was too narrow artificially restricted patient access, program growth and our ability to change. We need to develop a broader view and more flexibility about serving children, serving more noncancer patients, and so forth.” Similarly, “The original mission is narrowly and inflexibly defined. I think of this model as ‘The Gates of Heaven.’ Patients must be just right, families in place, the disease one that the program is comfortable with, etc., etc. Such programs do not grow and over time —
they find themselves threatened by other providers whom they identify as somehow taking unfair advantage.” The same observer continued, “Another aspect of lack of flexibility is to define any new high tech treatment ‘not hospice’ and thus bar its use in all cases, rather than allowing use as appropriate. Part of this is financial, but part is philosophical. Needless to say physicians who insist on this treatment will no longer refer. These decisions are often difficult calls.” The impact of management on mission was also noted. “As the agency grows and founding mothers and fathers are replaced by directors who have been hired from outside of the field, the senseof mission is lost and/or cannot be transmitted to employees.” In some instances specific individuals or attitudes were seen as barriers to meeting the hospice mission. These included the referringphysician: “Continuing barriers are set up by some physicians who are not receptive to a holistic approach to end of life issues.” Also seen as barriers were members of the hospice team. As one director commented, “In the beginning my staff was filled with our vision and mission. Now it’s ‘pay me what I am worth, limit my hours, don’t ask me to take on-call. Don’t put performance measures on me (that’s not hospice), but, treat me like a valued volunteer on the hospice team!’ They want the best of both worlds and feel betrayed if they don’t get it.” Another director noted the importance of unrealistic goals, “Unrealistic expectations of what we can achieve are a problem. The, ‘We’re going to fix everything for everybody,’ syndrome leads to failure and feelings of inadequacy.” Cultural attitudes were also seen to provide problems: “Cultural barriers to acceptance of good symptom control such as ‘The War on Drugs’ can be a stumbling block.”
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Management was directly identified as the problem in a number of observations the hospice directorsmade. There was repeated criticism of management over-regulation, such as: “Hospice has become very rule-oriented. The rules of the organization are transmitted to new employees rather than the mission.” Another commented, “Overregulation is a major problem. Outside pressures keep us focused on picayune details rather than the bigger picture.” In a similar vein a third confessed, “I have to spend my day bean-counting when I should be star-gazing.” Pressures imposed by a system illsuited to meet the hospice mandate were seen as focusing attention away from the original mission. Such pressures included: • “The need to maintain a short length of stay which has us using up all our energy chasing emergencies;” • “Increasingcompetition (oranticipated competition) for patients;” • “The necessity of meeting corporate demands by a parent agency that wants to use the same productivity measures used for other departments.” Others were forced to conclude that keeping the hospice mandate as now defined demanded, “more precise prognostication for non-cancer patients,” and, “a national data base to better understand parameters of hospice utilization trends.” Finally, one director commented on the problems inherent in team functioning, saying: “Some programs talk ‘Team’ with implied implications for egalitarian power sharing and decision making, while in reality those with the power hold on to their turf with a ferocious grasp.” It isn’t too surprising that we are all having problems in reproducing the ex-
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ample of ‘balance’ so impressively created by Cicely. At the first International Hospice Conference in India, held last November, the final session looked at “Problems in Hospice Care” and compared mission and management difficulties encountered in East and West. Dr. Robert Pye reports that while the differences initially looked vast, “all the problems we encounter while tinged by a local flavor, are very similar, that is: money/governmentl bureaucracy/getting mainstream medicine to acknowledge us, etc.”6 Reassuring isn’t it? But is this all wecan say? I think not. For there are other messages that are being sent out from every corner of this great land with increasing clarity. Messages about health care delivery that must be acknowledged if this review of mission, money and management isn’t to be simply platitudinous. A New York publishing executive telephoned me regarding some matters of mutual interest. In the course of the conversation she confided, “Our health care system is a nightmare. I could never consider changing my job because ofthe risk of a lapse in insurance coverage. It has become a factor that rules our lives. Everything you have worked forover a lifetime can be wiped out in a few days if a family member gets sick. When I became pregnant I was afraid to tell anyone until I was sure I was covered. When I did see the obstetrician his secretary informed me the initial consultation fee would be $200 up front, and when I saw him he said, ‘I want to clarify our financial contract before we start. My fee to deliver your baby will be $3500, paid in cash, in advance.’ When I told him I had insurance his comment was, ‘That’s your concern. You apply for it. The fee must be paid in advance.” She continued, “A colleague’s teenage sonhas just been foundto have a brain tumor. When he had the first seizure his mother was frantic. When
the ambulance came, they asked if she was insured before agreeing to take him to the hospital.” Health care as a commodity! Like designerjeans and cosmetics. Money no longer a means to an end, but an end in and of itself. Nashville legal aid attorney Gordon Bonnyman recounts’7 the experience of a 24 year-old diabetic construction worker named Terry Takewell whose job carried with it no insurance benefits. With his medical record Terry could not buy an individual health insurance policy at any price. One day after work a neighbor found Terry in poor condition in the trailer where he lived and arranged for him to be taken to theMethodist Hospital in Somerville, Tennessee. The Emergency Room doctor diagnosed acute ketoacidosis and ordered immediate admission. Within the hour, news ofthe admission had reached the acting hospital administrator. Alarmed at the prospect of the young man adding to the already considerable unpaid hospitalbill accrued during previous illness, the hospital official personally went to Terry’s hospital room and escorted him out of the hospital, leaving him propped under a tree in the hospital parking lot. When questioned by the indignant neighbor, hospital officials said that the admissionhad been denied because of the unpaid bills. The neighbortook Terry home to his trailer where he died that night.182° What is the relevance of all of this to our assigned topic this morning? One hospital-chain executive observed, when questioned about his denial of treatment to a dying cancer patient, “General Motors isn’t expected to give away cars. Grocery stores don’t give away food. Why should anyone expect us to give away care to someone who can’t pay for it?”7 Dear colleagues, that Terry Takewell died is a tragedy beyond measure, but a tragedy of even greater
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dimensions is found in the myopic comment and closed heart of the hospital executive, and greater still is the tragedy of those of us who have become sufficiently numbed by stories like Takewell’s that another one no longer evokes moral outrage. The recent events in Los Angeles led me to question the validity of a call for moral outrage, and I changed the above text to ‘moral indignation.’ But moral outrage is exactly what is called for, both in response to the acquittal of the four police offers who beat Rodney King, and in response to our own inertia when we hear another Terry Takewell story. The Los Angeles riots were not an indictment of moral outrage. They were an indictment of anarchy and violence the illegitimate children of moral outrage. What both situationsare testimony to, is the need for the true child of moral outrage justice. President Bush’s recent criticism of the Canadian health care system on the heels of your kind invitation for me to examine with you the balance between mission, money and health care management, taken together with the facts, begs us not to mince around issues. Let me be quick to say two things. First, I do not holdup the Canadian health care system as a paragon of perfection. To work in it is to love to hate it. Second, I do not feel comfortable offering these comments, but my minor discomforts can hardly be relevant measured against the scope of the problem and the need to give voice at every opportunity to the ever-increasing torrent of protest from the Americanmiddle class. The facts speak for themselves. Infant mortality rates are considered by the World Health Organization to be one of the most reliable barometers of how well a nation attends to the health needs of its people. The USA ranks 15th among nations according to this criterion. Infant mortality rates among blacks are twice as high as those for —
—
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whites. An African-American infant is less likely to survive to her first birthday than a child in 28 other countries, including Cuba, Singapore and Bulgaria.21 At present, 37 million Americans have no health insurance. That number continues to climb as hyperinflation pushes the cost of insurance above the reach of more and more individuals and employers.2224 A further group, estimated to be at least as large, is officially classified as ‘underinsured,’ that is, their basic health care needs are not covered.25 ‘Dumping’ is the descriptive term applied when hospitals turn away patients who lack insurance and money. Though it is illegal, a 1987 study published in JAMA estimated that 250,000 emergency patients are dumped each year from American hospitals.26 The American Cancer Society reports that cancer survival rates among the uninsured are markedly lower than among those with adequate health coverage.27 In addition to the cost in unmet suffering, the current system is associated with worrying dollar costs. For more than two decades health care costs have inflated at twice the rate of personal incomes.2~29Furthermore, projections for the future by two Washingtonbased advocacy groups, USA Foundation and Citizens Action predict that health spending per person will more than double the 1980 level by the end of the decade.3°As a result, more and more of those in the middle class will become uninsured; the number of public hospitals serving the uninsured will continue to drop; and, under pressure of rising costs, states will continue to cut back on their Medicaid programs, as more than 30 are proposing to do this year.31’32 Analysts note that the brunt of this staggering burden is being borne by those inthe lower socioeconomic class.33 At the same time, commercialized
health care as a consumer product generates significant profits for those at the other end of the economic spectrum. In 1990, the mutual funds that outperformed all others were those which invested exclusively in health care stocks.~In 1989 the average physician earned approximately $155,800;~~ in 1990 $164,000.36 Doctor and hospital bills are a leading cause of bankruptcy in the United States.’7 Is there light at the endof thetunnel? For five reasons I think there is. To begin with, the election of Sen. Harris Wofford in Pennsylvania under the banner of the right to medical care. Second, there is the light being generated by the growing anxiety over access to health care from a middle class already squeezed by recession. Third, health care has become a central issue in the presidential campaign. Fourth, as Watergate demonstrated, your country has a marvelous ability to self-correct that is the envy of the world. When a problem is diagnosed you Americans are pretty good at finding solutions. Fifth, and in my opinion most significantly, there is light because the American health care system contains an intrinsic catalyst for change and healing YOU. You entered hospice to promote change; to bring compassion. There can be no more worthy arena for the use of these gifts than the current need for radical health care reform. But isn’t the cost of health care already too high? One might well ask, ‘If the inflated health care budget is already bankrupting the nation what would happen if we tried to care for the tens of millions of Americans now excluded from the system?’ Bonnyman responds, “In fact, America’s unique institution of commercialized medicine is far more expensive and less efficient than that of other industrialized nations that provide care to all citizens. Dollars presently wasted on a —
bloated health care industry are ample, if redirected, to meet the needs of people now being denied care.”7 Once again the facts are thought-provoking. An estimated 20 percent of US health spending goes into the administration overhead tied to the marketing of thousands of different types of health insurance and their costly associated claims processing bureaucracy.37’38 Hospital costs are inflated by the expenses related to keeping open vacant hospital beds which, in fact, account for more than one third of the 39 national total on any given day. In spite of the existing national glut of hospital beds, competing hospitals continue to build costly new facilities to ‘capture better market share.’4° The padding of insurance claims is generally agreed to be common place, significantly adding to health care costs. What reforms are needed? Effective reform would be characterized by four distinguishing features.’7 • Universality. Basic healthcoverage would have to be extended to all citizens with quality of care independent of ability to pay. • Affordability. Effective cost controls must protect both the individual (against costs related to particular needs such as medications or nursing home care), and the national purse (against spiralling health care inflation). • Accountability. A reformed health care system should be accountable to thepublic with built in incentives that foster primary, preventive and quality care rather than over-useof high-tech invasive medicine. A responsible public with authority for quality control should disarm the potent entrepreneurial legal forces that have been so effective in padding lawyers’ incomes and leading to excessive
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malpractice insurance costs and settlement awards. • Political feasibility. Current band-aid reforms recommended by political leaders out of fear that anything more substantial would not be politically feasible must give way to new definitions of what is possible. Reform will become politically viable only when the people find their moral voice and demand change. There is much to accomplish. Where does one start? The immediate task is to change consciousness, not structures. There are nonebetter equipped to lead in the fight toward consciousness raising than you. For there are none who have experienced more graphically the truth of the observation that the strong need the weak as much as theweak need the strong in the equation of community survival. A new balance in mission, money and management is needed in your health care system. You’re not alone. The secretis, it’s needed in ours as well, and in the system in Great Britain, and on, and on. Many believe that this current ‘recession’ is, in fact, part of a global financial restructuring that has arisen as part of the changing world order. There is an urgent international need for new management answers that will help us ensure economically feasible health care for all as a basic right in each of our countries. We have a vested interest in your success in this health care revolution. Once again we, your international colleagues, look to you for leadership in problem solving. We wish you good luck and God speed.~
References 1. du Boulay 5, Saunders C: The founder of the modern hospice movement. Hodder and Stoughton, London, 1984:172 2. Ibidem:86
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3. Ibidem:90-91 4. Ibidem:174 5. Saunders C: Personal communication, 1978 6. Saunders C: Hospice and palliative care: An interdisciplinary approach. Edward Arnold, London, 1990 7. du Boulay S: ibidem:lOO 8. Bettetheim B: Home for the heart. Thames and Hudson. Cited in du Boulay, ibidem: 135, 1974 9. du Boulay: Ibidem:126 10. Ibidem: 126-127 11. Potter iF: Achallenge for the hospice movement. NEIM, 1980;302:53-55 12. Paradis LF, Usui WM: Hospice volunteers: The impact of personality characteristics on retention and job performance, The Hospice J, 1987 ;3(1):3-30 13. Ahmedza, 5: Invited review for Mor V, Masterson-Allen S. Acomparison ofhospice vs conventional care of the terminally ill cancer patient. Oncology, 1990;July:94-96 14. Mor V, Masterson-Allen5: Acomparison of hospice vs conventional care of the terminally ill cancer patient. Oncology, 1990;July:85-91 15. Selinske C: Personal communication: Results of informal survey of New York State Hospice directors, March 1992 16. Pye R: TheFirst International Hospice Conference in India. West Australia Palliative Care Newsletter, 1991;38:6 17. Bonnyman G: Moral malpractice. Sojourners, 1992;21(3):l2-17 18. Equal access to health care: Patient dumping. A hearing before a subcommittee of the Committee on Government Operations, House of Representations. 100th Congress l987;July 22:14-16 19. Hill ZM: Testimony before the Human Resources and Intergovernmental Relations Subcommittee of the House Committee on Government Operations. l987;22 July: 17 20. The Wall Street Journal, 1988;29 Nov: 1 21. Children’s Defense Fund, The Health of America’s Children: Maternal and Child Health Data Book. Washington DC, l989;18 22. Congress Research Service, Library ofCongress, Health Insurance and the Uninsured: Background data and analysis. Energy and Commerce Committee Print No. 100-X, Washington, DC, 1988 23. U.S. Bipartisan Commission on Comprehensive Health Care (The Pepper Commission), Final Report: A call to action. Washington, DC, 1990:21-23 24. Office of Management and Budget: “Introductory Statement: The Problem of Rising HealthCare Costs,” presented before the Senate
Finance Committee, 1992;16 April:6-8 25. Farley P: National Health Care Expenditures Study: Who are theunderinsured? National Center for Health Services Research, Washington. DC 1984:20 26. Ansell D, Schiff R: Patient dumping: Status, implications, and policy recommendations. JAMA, 1987;257(l 1):1500-1502 27. American Cancer Society: Cancer and the poor: Areportto the Nation, Atlanta GA, 1990:7 28. Peden E, Lee M: Output and inflation components of medical care and other spending changes. Health Care Financing Review, 1991;l4(2):75-81 29. Bipartisan Commission on Comprehensive Health Care (The Pepper Commission), Final Report: A call to action. Washington DC 1990:38
30. Families USA Foundation: The growing threat to the family Budget. Washington, DC, 1991 31. Bonnyman 0: Results of July 1992 survey of the states. Personal communication with Super D. Attorney, The National Health Law Program, Washington, DC 32. Center on Budget and Policy Priorities and theCenter forthe Study ofthe States, The States and the Poor: How budget decisions in 1991 affect low income people. Washington, DC, 1991:31-44 33. U.S. Bipartisan Commission on Comprehensive Health Care (The Pepper Commission), Final Report: A call to action. Washington, DC, 1990:42,43 34. USA Today: How stock funds performed last year, 199l;7 Jan:3B 35. Pope G, Schneider J: Trends in physician income health affairs, 1992;ll(l):181-194 36. Rich S: Washington Post, 21 May 1992 37. Woolhandler 5, Himmelstein D: The deteriorating administrative efficiency of the U.S. Health Care System. NEJM, 1991; 324:1253-1258 38. U.S. General Accounting Office: Canadian Health Insurance: Lessons for the US, GAOIHRD-91-90, Washington, DC, US Govt Printing Off, June 1990 39. American Hospital Association: Hospital Statistics, 1985 edition. Chicago, 111, 1985 40. Ginsburg P. Koretz D: Bed availability and hospital utilization: Estimates of the ‘Roemer Effect.’ Health Care Financing Review, 1983;5(l):87-92 The author gratefully acknowledges the assistance ofGodon Bonnyman,Carol Selinske and Sojourners magazine, without whose collabora~on this paper could not have been written.
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