Abstract
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To earn a living practicing internal medicine in the 1950s and '60s in the United States, an internist ordered only the laboratory tests and/or radiographs necessary to confirm a clinical diagnosis made after taking a history and performing a physical examination in the office. Patients were “price sensitive,” to use a contemporary term. Clergy, physicians' families, dentists, relatives, and some hospital staff received free medical care, but other patients were responsible for their own fees. There was usually no health insurance. In 1957 in New Orleans, Louisiana, the cost of a follow-up office visit to the doctor was $5.00 and that of an initial visit or a home visit (which was more common then) was $10.00.
Change in U.S. Medical Care and Culture
In the early 1960s, scientific advances in diagnosing and treating disease were of great medical significance but sometimes produced unintended or unforeseen consequences that worsened the care of patients with a life-threatening illness and altered the relationship between doctors and their patients. That evolution of medical care over the past half century has been influenced by several factors:
Advances in technology and science
The most dramatic event that changed both the culture of the public at large and the practice of medicine was the use, in the late 1960s, of cardiopulmonary resuscitation (CPR) to prevent or reverse death. That achievement excited the medical community. The public were even more excited and suddenly began to believe that death was an option and physicians were their greatest allies in preventing it.
Public perception of hospital care for the dying
Public reaction to successful CPR rapidly affected the care of hospital patients who were dying of an incurable disease or as a natural consequence of the multiple comorbidities of aging. Families began to insist that CPR be used to prevent the death of their loved ones with a terminal illness or condition, regardless of the futility or medical inappropriateness of that procedure. When threatened with the possibility of litigation, hospital administrators issued a mandate to their medical staff: CPR was to be performed on every patient dying in their hospital unless the attending physician and a second physician had written a “do not resuscitate” order on the patient's chart. That mandate usurped the doctor's role in end-of-life care and resulted in the inappropriate use of CPR in hospitals for decades. For empathetic physicians and hospital staff, those inappropriate CPR attempts were disturbing and depressing events. That change in culture and policy in hospital practice decades ago began the “medicalization” of death.
Government insurance for the elderly
When the U.S. federal government began to pay for the hospital care of those older than age 65 (Medicare Part A) and their physician charges (Medicare Part B) and Medicaid began to pay for the care for the poor, it changed the “price sensitivity” of patients ill enough to die. In the face of the optimism of medical science, there was no reason not to “try,” whether or not that was a good idea.
Continuing advancement of medical science
In the 1970s, new advances in technology and science enabled internists to limit their practice to one of several fields in internal medicine and allowed them to specialize in the use of effective new treatments and techniques in cardiology, nephrology, endocrinology, gastroenterology, etc. With Medicare paying the bill, there was no reason to limit the number of physicians whom a patient could use. The many advantages of such specialization, however, produced an unforeseen problem: the fragmentation of medical care. Many patients no longer had a personal physician to oversee their therapy; their care was instead provided by specialists and without adequate oversight or coordination of care. Specialist physicians were taught about the diagnosis and cure of diseases in their field but received little or no instruction about treating the whole patient. Medical education was compartmentalized into “silos” for each specialty.
Effects of evidence-based medicine
The emphasis on scientific evidence to guide medical practice became paramount in the mid-1970s with the publication of the results of research studies. That published information often refuted previously accepted beliefs about the value of treatments for some diseases. Evidence-based medicine, which is the conscientious, explicit, and judicious use of current best scientific evidence in making decisions about the care of individual patients, has been the standard of care in the United States for four decades. At the same time, the contribution of experience, expertise, and wisdom acquired by years of applying the evidence to individual patients in the practice of medicine was devalued and the role of experienced clinicians in educating students was diminished. Evidence-based medical education then became the benchmark for all fields of medical science, and the focus of care shifted to the diagnosis and cure of diseases and away from attention to the individual needs of the people affected by those diseases.
Hospice services
In the United States in the 1970s, hospice services designed to improve end-of-life care became available in some settings as a reaction to the care that the dying were receiving. Then, in 1982, the Medicare Hospice Benefit was established to pay for the care that qualified hospice agencies were providing to patients (usually those at home) who had a terminal illness and a life expectancy of 6 months or less if their disease followed its expected course. Although that program corrected some of the deficiencies and inequities in end-of-life care and was thus of great value to terminally ill patients and their families who used that service, it imposed unforeseen consequences. Those who created the Medicare Hospice Benefit believed that patients who enrolled in hospice care would have cancer and would likely die in 6 months. The authors assumed that the patient's physician would be responsible for symptom management. The physician role as a hospice medical director was primarily administrative; nurses were the primary providers of comfort care. Of course, retrospectively, it is obvious that the assumption that every physician knew how to manage the symptoms of advanced disease was in error. Consequently, hospice nurses were in the position of diagnosing and treating patients. Community doctors “did what the hospice nurse said.” Twenty-five years later, Thomas Hoyer, who led the Center for Medicare Services team that helped write and administer the legislation, stated that in retrospect he would have included doctors as active participants in caring for the hospice patients who required longer, more complex courses of treatment due to end-organ disease and that he should not have assumed that most hospice patients would have cancer. 1
Most physicians, like most people, find thinking about death uncomfortable. It is not surprising that clinicians who are taught to fight against cancer, to cure patients, and to prevent death have little incentive to embrace the hospice-care philosophy or learn about end-of-life care. The physicians of today have been negatively influenced by those unanticipated effects initiated decades ago.
The Health Maintenance Organization Act
The Health Maintenance Organization Act of 1973 2 was developed to help control the skyrocketing costs of medical care. Under that legislation, maintenance care organizations (MCOs) were established in the 1980s to change the health care industry from a non-profit to a for-profit business model managed by the insurance industry. Under that new model, patients were required to visit physicians on a specific MCO panel; former patients not belonging to that MCO were obliged to find different physicians. Physicians were paid for their services to patients by an insurance company that required preapproval for the hospital admission of patients, for operative and therapeutic procedures, and for the prescribing of certain expensive drugs. Those radical changes in medical practice further diminished the traditional doctor-patient relationship by introducing a third-party payer.
The business of providing medical care
Population medicine and the business of medicine increased in the mid-1990s, when large health care organizations increased profits by shortening patients' routine office visits to 15 minutes (to increase the number of patients a physician would see in a given day); this necessitated the back-to-back scheduling of those patients like widgets processed on an assembly line. Those requirements reduced the time that physicians spent talking with patients and understanding their needs and concerns and provided little time for building trust and rapport.
The Enduring Value of Palliative Care and Palliative Medicine
In the 1990s,the gaps and flaws in end-of-life medical care engendered great dissatisfaction among patients and their families, and a broad consensus that change was necessary resulted; change that would require the support of the community, philanthropic organizations, health care organizations, and the federal government. Because physicians controlled the practice of medicine in individual patients, it soon became apparent that no meaningful improvement in palliative or end-of-life care would happen without the active participation of physicians. In the mid-1990s, this was proven by the results of the multi-center Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) trial, 3 in which trained social workers and nurses encouraged the referral (to hospice care) of hospitalized patients with a terminal illness and a short prognosis. That study failed to show any improvement in the number of referrals to hospice because there was no change in the way in which participating physicians were managing end-of-life issues.
The spectacular failure of the SUPPORT trial energized efforts to improve end-of-life care by educating physicians and resulted in the development of palliative medicine as a new medical discipline. From the late 1990s until 2008, palliative medicine was focused on relieving the suffering of patients with a 1-year life expectancy and improving their impaired quality of life. The spectrum of conditions needing palliative care was expanded in 2008 to include all patients of any age with any disease that caused unrelieved suffering and impaired quality of life. Since 2011, there has been a rapid acceptance of palliative care in medical education and practice, not only in the United States but worldwide.
Palliative Care in Southeast Louisiana: A Personal Perspective
At 72 years of age, I was ostensibly at the end of a career spanning 42 years as an internist in New Orleans. I was no longer formally connected with academia, yet I played a role in the development of palliative care in Louisiana. In 1999, personal tragedy and serendipity each played a role. While in hospice care, my eldest son died of AIDS at our home 2 months after I closed my medical practice and moved to Covington, Louisiana. Impressed by the care that he had received from the non-profit Hospice of St. Tammany in Covington, I soon became the physician for that hospice and began a 13-year career as the medical director there.
During my bereavement in 1999, serendipity also played a role when I read about the new specialty of palliative medicine in an article by Jerome Groopman, a Harvard oncologist, in the New Yorker. That article, in a lay magazine, was also a stimulus that led me to a career in palliative medicine. Excited by the possibility of becoming a palliative care specialist, I joined the American Academy of Hospice and Palliative Medicine, studied for a year, and was certified by Educating Physicians on End-of-Life Care (EPEC) as a trainer in 2000. During that year, I found further inspiration that led me to embark on a crusade to help correct the ethical and moral dilemmas posed by patients with undertreated chronic pain. Articles by Daniel Brookoff in the journal Hospice Practice4,5 suggested that: 1) chronic pain should be considered a disease; 2) N-methyl-D-aspartate (NMDA) receptors in the dorsal horn of the spinal cord have a key role in the cause of neuropathic pain; and 3) the opioids methadone and levorphanol, which block the effects of NMDA receptors, are effective in relieving neuropathic pain.
I continued my medical training with great interest, and in 2001 I was certified in the practice of hospice and palliative medicine by the American Board of Hospice and Palliative Medicine. Later that year, when my proposal to develop a palliative care program in Covington was rejected by a local non-profit community hospital, an “angel” appeared in the form of an elderly volunteer at the Hospice of St. Tammany who was also the head of a family philanthropic foundation. She said, “Don't get tied down by the hospital. They will control what you want to do. If you create a 501(c)3 educational foundation, I'll give you the seed money to fund it.” That gift from her family's foundation made the creation of the Palliative Care Institute of Southeast Louisiana possible. In 2002, the U.S. Internal Revenue Service granted a 5-year provisional approval to the institute and then conferred final approval, which established the institute as a non-profit educational foundation, in 2007.
Now no longer a part of academia (but connected to it by long association), the Palliative Care Institute has created a program that enables partnership and collaboration with medical schools, academic centers, hospitals, hospices, and community organizations by providing educational lectures and seminars to those organizations at no cost while engaging them to provide an audience, a venue, marketing, and (where indicated) continuing education credits. In 2012, the institute partnered with the Louisiana Mississippi Hospice and Palliative Care Organization to send a palliative care physician and a palliative care team member to rural communities in Louisiana and Mississippi, where they provided education about end-of-life care for health care professionals who wanted and needed that information but lacked the means to attend regional or national conferences. During the past 13 years, and with support from community foundations, the institute has provided more than 190 free lectures (including information about the effectiveness of methadone and levorphanol in relieving refractory neuropathic and complex pain), in-service sessions, and seminars to health care organizations and educational institutions in Louisiana and Mississippi.
As I have learned over the course of a long professional career, random events have sometimes shaped the course of that career. Now approaching my 88th year, I have been commissioned to film five recent lectures in my portfolio to serve as educational tools for health care professionals of a multi-state homecare/hospice/palliative agency. My realizing the capability of modern technology to extend the educational reach of the Palliative Care Institute is leading to the creation of a web-based library of lectures, filmed by a colleague cinematographer, that I will select for release by the Palliative Care Institute to health care professionals and to the public via the Internet, thus continuing the institute's mission to relieve the suffering of patients and their families.
The changes in health care that are underway and on the horizon in the United States and the ways in which that care will be delivered render it likely that the balance between the art and science of medicine will improve and a more empathic and caring system will evolve for all. Conceptually, palliative care has been an integral component of good medical care since antiquity. All aspects of good medical care have expanded and are made practically available to patients by specialists. From my perspective, it makes sense that there is now a specialty to ensure that what was a part of comprehensive patient care in the 1950s remains a part of contemporary care. It's not that we've “rediscovered” something; the new specialty is a response to the vast expansion of medical knowledge. The field of palliative care must grow large enough to provide the right balance with other medical specialties in a team approach to care. That the larger “house of medicine” now expresses its appreciation of palliative medicine as part of contemporary care is a vindication, of sorts, a renaissance of appreciation. I'm grateful to have practiced long enough to see the whole cycle in my lifetime, which prompts this aphorism: What goes around comes around.
About the Author
For the past 15 years, John P.“Jack” McNulty, MD, FACP, FAAHPM, has sustained his commitment to furthering the art, science, and practice of palliative care medicine by serving in the following capacities:
Director, Palliative Rural Education Project, 2012–present Chairman, State of Louisiana Advisory Committee on Hospice Care, 2009–2012 Member, Cancer Committee, Tulane University School of Medicine, 2009–2011 Diplomate in Hospice and Palliative Medicine, American Board of Internal Medicine, 2008 Fellow, American Academy of Hospice and Palliative Medicine, 2006 Associate professor of clinical medicine, Louisiana State University School of Medicine, 2004–2008 Member, Palliative Care Task Force, National Rural Health Agency, 2004 Founder, Palliative Care Institute of Southeast Louisiana, 2002–present Consultant on chronic pain and palliative care, Ochsner Health System, 2002–2010 Certified trainer, Educating Physicians on End-of-Life Care, 2000–present Medical director, Hospice of St. Tammany, Covington, Louisiana, 2000–2013 Consultant on palliative care, St. Tammany Parish Hospital, 2000–2012
Footnotes
Author Disclosure Statement
No competing financial interests exist.