TREATMENT OF PAIN AND SUFFERING IN THE TERMINALLY ILL

by Alan D. Lieberson, M.D., J.D.

INTRODUCTION

Introduction/Personal
Introduction/Outline
Introduction/Highlights

Introduction/Personal

My wife cannot believe I am writing a book on care of the terminally ill patient. She was with me during the last few years of my medical practice when I stopped going to funerals simply because I couldnít do it any more. Too often I had become the deceasedís "best friend" and confidant during the dying process. And too often they had joined mine. Too many "best friends" to mourn. Too many I thought -- mistakenly, I now realize -- I could not help. I would pull myself together to be with each through their death, but then there seemed to be nothing left in me to comfort the families at the funeral. Others would have to do that! What energy I had left I felt a need to preserve for the next patient who needed my support through the dying process.

Perhaps I was deceiving myself. Perhaps I just felt more comfortable treating the dying patient than consoling the family because I have personally always felt more deeply for the patient who "will not see another one," than for the families. Perhaps I just needed to be alone to think about and grieve for the friend who was gone instead of spending time with family members who I perceived as having the benefit of time to reassimilate into the world and enjoy the pleasures of living after their personal periods of grief had ended.

So how, fifteen years after leaving the practice of medicine, do I come to writing a book about care of the terminally ill? It took a circuitous path which I will summarize believing as I do that readers should know the probable viewpoints and biases of the writer before reading any non-fiction:

I grew up in Westchester County, the oldest son of a New York City internist who later spent the last twenty-two years of his life caring for the medical needs of the people in St. Thomas, U.S. Virgin Islands. After attending Cornell undergraduate school for three years, I entered Yale Medical School, graduating in 1962. Six years later, after four years of training at Indiana University Medical Center and two as a general medical officer in the Air Force, I joined three other internists at "IMA" (Internal Medicine Associates of Westport, Connecticut) where I practiced for the next sixteen years.

As to my personal experience with dying patient while practicing medicine at IMA, I should point out that, for various reasons, it was somewhat limited and quite different from most internists. First, because I was the youngest partner for most of my sixteen years at IMA and because it served an unusually "young" community, I had few of the older patients who usually make up most of the terminally ill patients in a physicianís practice.

Second, as a partner in IMA I dealt primarily with a highly motivated, well educated and financially secure population with the ready availability of specialists, transportation and home health care. At the time, the resultant lack of financial concerns gave me the opportunity to treat many more terminally ill patients at home than most other internists around the country. In addition, I must point out that from the beginning I tended strongly to think in terms of quality of life and not quantity, concentrating more on patient comfort and home care than the latest techniques to prolong life. Obviously, I would take a different approach if it was the wish of the patient that "everything be done," but when faced with such a patient, I would frequently ask the oncologist to basically take over active care in the hospital while I limited my own patient visits primarily to dealing with the patientís non-medical concerns.

As a result, most of my practice dealing with end-stage care of patients dying of chronic disease was undertaken at home after caregivers had accepted limitation of therapy to comfort care. To the best of my memory, none of these patients received artificial nutrition or hydration once they were no longer able to take fluids by mouth. With liberal use of narcotics, sedatives for sleep and antiemetics to control nausea and vomiting, I do not remember any dying with significant pain or physical discomfort, although the mental suffering of patient, family and friends was, at times, overwhelming. Hopefully less evident was the suffering of their personal physician, but at times it showed through. I will never forget one young women with terminal breast cancer who caught my tears as I left her room five minutes before she died saying "Itís alright Alan. Iím just going to get there before you. Iím sure weíll see each other again in the future."

There were, of course, some terminal patients who were treated in the hospital and received intravenous fluids while they were dying. In retrospect I think they suffered more than those at home, but I must admit this may be a chicken/egg issue. It may be it was because their suffering was harder to control which explained their being admitted to the hospital, and not because they were receiving fluids in the hospital that their suffering was worse. [Note: I realize this commentary is a little out of order, but I add it as background to explain my obvious bias in the book in favor of terminal care at home.]

Going back to my history, in 1984, after twenty-four years of patient care beginning in medical school, I quit the practice. How much of my decision to leave was due to the emotional drain of treating the terminally ill I do not know, but I know it was a significant part. Perhaps more important was the time commitment to the practice in general, with little if any left to be with my family, or just to think, read, research, and write. But what I do know is my leaving had nothing to do with the science of medicine, or the patients themselves.

To the contrary, I have always loved the study of medicine and the interrelationship with office patients. If I could have stayed in the office and cared for one patient after another from 7:45 A.M. to 6:00 P.M. each day I never would have left. Unfortunately, though, when the office was done, there were hospital rounds. And after that, records, reports and insurance forms. So one morning at two A.M., a moment I will never forget, while walking down a back flight of stairs in the hospital after trying to save a woman who had opted out of life with sleeping pills, I opted out of my life as it then existed too. In my own way, at my own time, while I still had time to find another method to fulfill my goals in life.

Obviously, the decision to leave clinical practice was not totally new. During the time I had thought about it I had not thought about going to law school, but having just remarried t the time, it was a natural thing to do. My new wife had just graduated from the University of Bridgeport Law School and I greatly enjoyed discussing legal issues with her. Law seemed to be an area of increasing influence on medical care and the thought of going back to school offered a refreshing break from the hectic years I had just experienced -- and it lived up to my expectations. It was fun. It was the easiest time of my life. I worked regular hours -- from the time my wife left to go to work till she returned -- and graduated first in my class at University of Bridgeport Law School (now the Quinnipiac School of Law) in December, 1986. Over this time, I spent two and a half years at my favorite pastime, learning. Just great. I recommend it for everyone. [Perhaps one of the reasons two of our four children are law school graduates, although they do not practice law.]

Contrary to my original intentions, following law school for a short time I joined a law firm headed by a close friend, Vincent Tirola. In addition to consulting on medically related issues, I worked primarily on projects involving research and writing. When one of the partners left the firm, I took on estate planning, researching the law and writing wills and trusts. As part of that project, I naturally became involved with advance medical directives and soon began writing a series of articles and books advocating that attorneys learn at least enough medicine to draft a clinically relevant living will -- not the traditional forms advocated by state statutes which clinicians routinely find to be worthless. Among my publications on the subject, the most extensive coverage was in a legal textbook, Advance Medical Directives, published by Lawyerís Co-Op, a company which is now part of the West Group of legal publishers. Soon after this, I wrote another legal "text" on Elderlaw, actually one volume of a set -- Volume 18A -- in the "Westís Legal Forms" series.

[Note: I actually believe advance medical directives should be drafted by physicians, not attorneys, because skillful drafting requires knowledge of both law and medicine -- and the law is much easier for doctors to learn than the reverse.]

As legal textbooks require yearly updates, publishing the legal textbooks requires me to take on a yearly review of the literature, including and increasing so, the issue of physician assisted suicide (PAS).

Studying this recent commentary, it quickly becomes evident that most patients who ask about aid-in-dying are not really seeking death. What they truly seek is better, more comfort-related medical care. This, in turn, suggests an initial request for aid-in-dying should not be taken literally, but reinterpreted instead as a request for improved care, most notably in the area of pain management.

As I worked with these thoughts and how to incorporate them in the yearly update in Advance Medical Directives and Elderlaw, the question of pain management happened to be raised at a Norwalk Hospital Bioethics Committee meeting. It was about the time the U.S. Supreme Court reversed the lower appellate courtsí findings that terminally ill patients had a constitutional right to PAS. In response to these thoughts, as chairman of the committee I suggested we research how pain and suffering of the terminally ill was managed at our hospital.

In the resulting division of responsibilities, as others gathered information about pain control and hospital care of the terminally ill, I looked for materials in the literature on relief of suffering. This led me to reconsider my own experiences with dying patients. In retrospect, as difficult as it had seemed at the time, the treatment of physical symptoms in fact had not been hard. What had been difficult was dealing with my patientís emotional suffering when faced with the reality their life was coming to an end. It was this process, now commonly referred to in the medical literature as "existential suffering," that had been the drain on my patientís emotions.

I began to gather the research materials and to summarize them for the committee. Slowly, the computer filled until it occurred to me the various reports I had gathered needed to be merged and summarized in such a way as to make it more readable for others. And so, this book.

Introduction/Outline

I have divided the book into four sections. The first deals with pain, the second with suffering, the third with advanced methods of dealing with unresponsive pain and suffering during the end-stage of disease, and the fourth with a variety of related subjects.

The section on pain include an introductory chapter, which discusses the present status of pain therapy in the terminally ill and how it is limited by medicineís own weaknesses, ethical considerations, legal constraints, cost-containment, and general misinformation of both patients and health care providers. It stresses that proper pain management can be almost one hundred percent effective and notes that well developed and accepted guidelines for pain therapy have been developed by numerous organization, including the World Health Organizationís "laddered" approach of analgesic therapies. This approach is then discussed at length in the second chapter, which also addresses medical, legal, and ethical aspects of narcotic use in pain management stressing the need to overcome the unjustified reluctance of many patients and families to use high dose narcotics for pain relief. In few areas of medicine is misinformation so rampant and destructive of patient well-being.

The section on pain then continues with two chapters discussing the numerous alternative approaches to pain management which have been developed -- from the highly technical placement of catheters carrying narcotics directly into the central nervous system and surgical ablation of pain nerves throughout the body to alternative methods of pain control, such as acupuncture, massage therapy, distraction therapy and TENS.

The chapters on suffering also begin with an introduction stressing some of the specific problems facing the terminally ill patient. Unlike pain, which can almost always be successfully managed, other physical symptoms, the topic of the second chapter in the section, are likely to be more difficult, but not impossible, to treat. This chapter discusses such symptoms as nausea, dyspnea (shortness of breath), constipation, urinary incontinence, weight loss, fatigue, etc. and includes suggestions on how non-drug interventions by the patient or family can help along with prescription medications.

A separate chapter discusses the symptoms and treatment of psychiatric problems frequently seen in terminal patients --anxiety, confusion, delirium, and, most importantly, depression. Far too often these treatable symptoms are accepted as an inescapable part of the dying process when, in fact, they can be significantly ameliorated or reversed by proper drug and/or non-drug therapy.

This chapter also deals in detail with "existential suffering," a subject which tends to receive insufficient consideration in most discussion of terminal care, for this is probably the area in which families are most likely to be the primary therapist for the dying patient. In addition to discussing the various issues which the patient is forced to face once they realize their existence is about to cease, it notes a number of therapeutic approaches which have been developed to address specific problems of personal integrity, disappointments in life, remorse, death anxiety, and issues of hopelessness, meaninglessness and futility. Goals of these approaches include (1) giving the patient a sense of completing family, financial and community affairs; (2) obtaining a sense of appreciation of oneís self and oneís life; (3) experiencing love of others and reconciliation with those with whom there have been differences; (4) obtaining a sense of meaning about life in general and an acceptance of the finality of life; and (5) obtaining a sense of oneís own existence as an individual along with the need to surrender that life to the unknown -- commonly referred to as "letting go."

Two additional chapters in this section deal with the specific question of when and how to use artificial nutrition and hydration in the terminally ill patient and a series of additional issues related to suffering in the terminally ill patient.

The third section of the book deals with specific advanced alterative approaches that may be useful or required in the treatment of terminally ill patient as they approach the end stage of their illnesses. It begins with a chapter on hospice, discussing concepts of palliative care and how hospice came to be a late arrival on the scene of modern medicine -- one often seemingly at odds with mainstream medicine. This chapter stresses the need to merge the teachings of the two disciplines, even as hospice remains an alternative to aggressive terminal therapy. In doing so, it points out the inexplicable legal factors which limit hospiceís ability to help more of the needy, the requirement to obtain certification of a life expectancy of less than six months, the need to forsake concomitant active treatment of the underlying illness, and the shifting of medical responsibility away from the personal physician of choice to a hospice based physician.

An important ethical and legal aspect of palliative care is referred to as "double-effect" therapy, the subject of the subsequent chapter. Under this age-old theory, therapy which is known to risk a shortening of life is permitted both legally and ethically if the intent of the physician is not to hasten or cause death, but to treat symptoms of the patientís disease. As well as this theory is accepted by law and ethics, it is widely misunderstood by patients, families and physicians. So important is this subject, it deserves a full chapter of discussion in any book attempting to help patients and their families minimize the pain and suffering of a terminal illness.

The next chapter deals with a now well accepted medical practice, actually an extension of the double-effect principal, referred to as "terminal sedation." Many symptoms of terminal illness such as pain, dyspnea, anxiety, and psychic distress, traditionally require therapy which employs analgesics like morphine and/or sedatives like barbiturates and tranquilizers. Although patient tolerance and careful manipulation of dosage will usually permit these medications to be administered so as to maintain the patientís conscious stream of thought, at times, especially in the last few days of life, this is no longer possible. It is in such a situation that physician assisted suicide may be warranted if it were legal, but in the absence of legalization, terminal sedation -- keeping the patient asleep until death supervenes -- supplies a reasonable alternative.

Another legal alternative to assisted suicide receiving increased medical, legal and ethical support in the last few years and one which does not require physician participation is the subject of the last chapter in this section. Commonly referred to as "voluntary terminal dehydration," when employed, it is usually done so by patients who have slowly progressive terminal disease, have accepted the inevitability of their own death, and who have, with full mental capacity, balanced anticipated pleasures and burdens of continued life and found the prospect to be overwhelmingly negative. Having reached this conclusion, they announce to the world an intent not to partake in further nutrition or hydration. As harsh as this may seem to the average person, as explained in the chapter, medical science and history as well as law and ethics are highly supportive of this approach.

The final section of the book deals with ancillary considerations in dealing with the dying process. The first chapter discusses advance medical directives which permit patients to maintain continued control over their own care until the end of life. Additional chapters in this section deal with grieving, religion and spiritualism, and a chapter discussing some of the unusual aspects associated with family issues and the patient with Alzheimerís disease, a subject of particular interest to the author.

Introduction/Highlights

Having given the reader a personal background and outline of the book, I will now follow the advice of an early teacher of mine who suggested when writing to always lay out what you want the audience to carry away from your writings up front -- so the reader can look for supporting evidence as they go through the materials. In thinking about this approach, I have come to also thinks in terms of an alternative reason for listing highlights -- to insure I have not totally forgotten to include thoughts I consider to be of high importance by mistake in the text. Here, then, are what I consider to be the highlights of what follows -- and what I would want the reader to "walk away with":

1. The best approach to the issue of physician assisted suicide is insuring competent, concerned care of the dying patient. When this occurs, few patients opt for suicide, most preferring to live their life as fully as possible to the end.

2. Most, but not all terminally ill cancer patients experience pain. Pain is also common in patients dying of AIDS, end stage kidney disease and, at a somewhat reduced frequency, in most other forms of terminal illnesses.

3. The pain of terminal disease can almost always be relieved by modern medicine with appropriate use of drug therapy and various anesthetic and surgical procedures to block nerve transmission of pain. Relief can also be achieved at least in part through alternative means of non-traditional therapy. In the rare situations in which pain ultimately becomes untreatable, both the law and medical ethics recognize the use of large doses of medicine even to the point of inducing persistent sleep as an alternative until death occurs, usually within a couple of days.

4. Failure to control pain in the terminally ill is usually not a result of the disease process but a combination of other potentially reversible causes. These include ineffective evaluation of pain severity, lack of knowledge on the part of physicians related to modern pain therapy, unwarranted fear by patients, families, and physicians of narcotic addiction, over-concern with potential ill effects of therapy, lack of financing for appropriate terminal care, the fear of litigation, abandonment of the patient by the medical profession, and patient-family-physician miscommunication.

5. Physical symptoms other than pain which frequently occur in terminally ill patients may be more difficult to treat than pain itself, but again can usually be controlled by modern medicine and appropriate supportive care. These symptoms most commonly involve shortness of breath, cough, nausea, itching, incontinence, and constipation.

6. Much can be done to help the psychiatric complications of terminal illness such as anxiety, agitation, confusion, and depression. It is a mistake to consider these clinical states to be a normal part of the dying process.

7. General symptoms of terminal illness such as weight loss, fatigue, weakness and troubled or prolonged sleep are difficult to treat toward the end of life, but are usually more troublesome to the family than the patient.

8. By far the most difficult suffering to deal with clinically is that which has come to be referred to as "existential suffering," the loss of the meaning of self, such as the feelings of abandonment, failure, guilt, fear, boredom, helplessness, dependency, hopelessness and anger. As suggested by a well-known physician/commentator on care of the terminally ill, dealing with these feelings requires the answering of such patient questions as "How will I die?" "Where will I die?" "Who will care for me?" "Will my pain be controlled?" "Will my values be preserved to maintain the quality of my life as it ends?" "What are my options for care and how will my care be paid for?" "Who will help the caregivers?" "Will my cultural, religious and spiritual beliefs be respected?" To the extent family and physician can give reassurance related to these questions, we can help relieve the loved oneís suffering.

9. To help the patient with existential suffering requires a consistent, repetitive and non-judgmental effort by family and friends to become aware of and to understand the personal concerns the patient is dealing with as he or she attempts to bring successful closure to life. Only with such knowledge, best shared by the various caregivers, can a supportive approach to the patientís existential suffering be successfully undertaken.

10. The routine use of artificial nutrition and hydration in care of the terminally ill has been challenged by almost all clinical health care providers. There is little evidence that routine use of invasive procedures to maintain nutrition and hydration after the patient has voluntarily stopped their oral intake results in prolongation of life and abundant evidence it only causes or increases most symptoms in the dying patient.

11. For unexplainable reasons, palliative care, which addresses the symptoms of disease as opposed to the cause of disease, has largely developed by the hospice movement almost as an alternative medical modality instead of as part of traditional medicine. This split tends to force an unreasonable and uncalled for decision on patients -- whether they want treatment for cure or treatment for relief -- when in fact the two are not and should never be considered mutually exclusive.

12. In spite of increasing recognition of hospice principles, hospice itself remains a major, underused resource in the care of the terminally ill.

13. Unfortunately, there are problems with hospice which could be easily reversed by changes in the law or minor changes in the hospice approach. First, hospice requires the patient to choose between care aimed at cure and that aimed at relief. Second, hospice care usually requires a change of primary physician. Third, hospice care would appear to require the patient to accept that further care of the underlying disease is hopeless and they are going to die. Fourth, payment for hospice care requires two doctors to certify the patient is expected to die within six months, which enhances any feeling of hopelessness.

14. Because future development of aid-in-dying in the form of physician assisted suicide is likely to be hindered by difficulties in developing appropriate legal procedure, interest and discussion of alternatives has heightened as a result of the recent Supreme Court decisions denouncing a patientís constitutional right to suicide.

15. One long standing alternative to aid-in-dying is based on the theory of "double-effect" therapy. It indicates the medical, ethical and legal acceptance of the high priority of treating symptoms in terminally ill patients even though the therapy carries a known potential risk of causing death or shortening life. A more advanced use of double-effect therapy involves prolonged and on-going sedation through the end-stages of a terminal illness ("terminal sedation") when other methods have failed to control symptoms.

16. Although the number of reported cases of patients who have voluntarily refused to take nutrition and hydration in order to hasten death are limited, these case reports suggest minimal associated discomfort. Other studies involving the discontinuation of nutrition and hydration also suggest the absence of significant suffering and an untroubled death.

17. Although many medical, legal, religious, and ethical commentators are against physician assisted suicide, only the most antagonistic fail to admit there are times when it would seem to be appropriate for a physician to help a patient die. In many of these situations, the need for increasing medications to control suffering would appear to hasten the patientís death, although, unlike assisted suicide, there is no direct intent to take part in a suicide. Alternatively, when the patient retains the ability to make medical decisions, "voluntary terminal dehydration" with appropriate therapy of resultant suffering, if any, would seem to be a reasonable consideration without significant opposition or the production of pain and suffering in the patient.

18. Pain and suffering is not confined to the terminally ill patient. It is important to realize that family, friends, and caregivers also suffer, and to make allowances for the effects of such suffering. Although we typically think of grieving as a process which occurs after death, this is not accurate, for much of the grief process, especially among the caregivers, occurs during the period in which the patient is terminally ill. Not infrequently, caregivers require help along with the terminally ill patient. Caregiving and grieving are particularly likely to co-exist when the terminally ill patient suffers from Alzheimerís disease.

19. The place of spirituality in resolving existential issues is receiving increased interest in recent years. Caregivers are often unable to make use of spirituality in attempting to help the individual patient because spirituality is, in fact, so individualistic. Confusion between religious practices and spirituality is also likely to confuse caregivers, who are likely to have lived with the sick individual for many years without gaining a true understanding of his or her spirit. It is therefore essential to forget what one thinks one knows about the patientís spirit and to listen carefully to understand his or her personal spirit, just as one must listen to understand the important issues in existential suffering.

Now, having reached these conclusions, I will set out to explain to the reader the basis for these statements, hoping thereby to facilitate an understanding between patient, family and health provider which will ensure the best possible care of the terminally ill patient. I suspect most of those who choose to read this book will be involved in the highly emotional state of caring for the terminally ill either personally or as a professional. I feel your pain, as well as that of the patient, and only hope that the information contained herein will be helpful in reducing that suffering at least a little. If so, it will please me greatly.

[Note: The author specifically exempts from copyright protection any forms he has developed and included in the book and notes that much of the quoted materials from the DHHS is also free of copyright protection.]


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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