CHAPTER 5. INTRODUCTION: SUFFERING IN THE TERMINALLY ILL

5.01 Suffering in the Terminally Ill; In General

5.02 Definition: What is Suffering?

5.03 Treating Suffering Related to Pain

5.04 On Death and Dying/Adapting to the Reality of Death

5.05 Suffering in the Terminal Illness and End-Stage Disease

A. End-Stage Physical Suffering

B. Mental Suffering

C. Existential Suffering

5.06 Effects of Suffering on Others

5.01 Suffering in the Terminally Ill; In General

As much as physicians have been criticized for undertreating pain in the terminally ill, they have been criticized even more for their failure to appreciate the full extent of their patientsí suffering. To some extent this criticism is justified, but in many ways it is not, for physicians should only be held primarily responsible for dealing with certain types of suffering, and are often limited in what they can do even in these areas. The following chapters will explore and discuss suffering at the end of life with the goal of enabling patients and families to work more effectively with health care providers to obtain its relief.

In caring for the terminally ill, certain general concepts are best addressed and agreed upon by physicians, patients and families before specifics are addressed. To begin with, all should agree to work together to treat patients with unconditional positive regard, sharing responsibility for relieving both the patientís physical suffering and the psychological distress which routinely coexists.

Next, although care must be primarily directed at the patientís suffering, the psychological distress and fatigue in families and health care providers needs to be addressed along with those of the patient. To this end, respite care for family and appreciation of the emotional drain on health providers needs to be considered by the management team as part of the division of responsibilities. This means physicians and families must work together to set the goals of therapy appropriate for each stage in the terminal process. From the beginning the support team must plan ahead for the time when aggressive therapy aimed at cure is replaced with one aimed at prolonging meaningful life, realizing that this, too, will subsequently be replaced by a third goal of maximizing comfort care and relieving terminal suffering. Failure to accept this anticipated progression or ambivalence in goal setting by the patient, family, or physician will invariably lead to needless suffering. To the contrary, by discussing beforehand the eventual need to make these goal transfers, the team will be well positioned to decide on the details of future plans as the need arises over the course of the disease.

Although physicians are generally held responsible to open discussions with patient and families about these goals and to try to obtain knowledge of the patientís desires, the author suggests failure of physicians to fulfill this obligation is best handled by the patient or family taking the initiative to invite this discussion. Waiting until the physician approaches the subject is too likely to result in delay past the time when the patient can take an active part in decision-making. This will not do, for it leaves the health care providers unsure of what is wanted and the patient devoid of the needed reassurance that his or her wishes will be honored.

Such discussions about the various possible approaches to treating the patient should begin early in the course of care and should focus on such issues as the availability of help at home, religious and moral beliefs, financial considerations, and patient concerns in particular. Having such discussions at a time prior to a crises situation also permits the physician and family to discuss the strengths and limitations of modern treatment of terminal suffering and to obtain informed consent directly from the patient for potential future interventions.

In developing a strategy to approach terminal care, the team should appreciate that the inevitable sadness and distress associated with death frequently renders it difficult to obtain the "good death" promised by many commentators on the subject. Some have suggested substitution of the term "appropriate death" for "a good death," but it is hard for a physician to accept the concept that death is appropriate after all the efforts put forth by the patient, family, and health care providers to prevent it from happening. Perhaps it is best to just admit there are limits as to what can be done and to aim simply to optimize the care given, including (1) relief of physical and psychological symptoms; 2) maintenance of as high a level of patient functioning as possible within limits set by the stage of the disease; (3) maintaining the opportunity to resolve uncompleted life tasks and goals through reconciliation, resolution of conflicts, communication in significant relationships, and pursuit of remaining hopes; and (4) working through the necessity for the patient to yield control to others in whom he or she has confidence.

In introducing a discussion of care of the terminally ill, appreciation must be extended to the work of Dr. Elizabeth Kubler-Ross who first introduced the concept of the five stages of adaptation experienced by the dying person: shock and denial, anger, bargaining, depression and acceptance. Although usually referred to as normal "stages," experience has shown they may occur simultaneously, may fluctuate in intensity, may occur in any order, and may not be successfully dealt with in every individual.

Dealing with each of these stages is often referred to as "coping," and the degree to which the patient is able to maintain self-esteem and stability while dealing with these stages as the patientís "ability to cope." Patients who are confronted with terminal illness generally resort to the coping mechanisms they have used to maintain self-esteem and stability in the past. Coping mechanisms may include denial, the assumption of a combative approach, distraction through task-oriented activities, or resignation. These coping mechanisms are reflected in the dynamic and content of the physician-patient relationship and in patient decision-making. Denial, willingness to receive hospice care, resorting to unconventional therapies, or the desire to receive experimental therapies all reflect different coping strategies and should be accepted even if they are different than one would choose for oneself.

In developing an overall strategy to obtain "the good death," Marilyn Webb, in her book, The Good Death; The New American Search to Reshape the End of Life, suggests the following in conclusion:

1. Open, ongoing communications. Honest and coordinated discussion among doctors, the patient, and the family begins well in advance of the terminal stage of illness and addresses the chance of recovery, as well as the benefits and burdens of treatment, for both patient and family. Advance directives are reviewed and, if necessary, revised as the situation changes.

2. Preservation of the patientís decision-making power. The patient is granted as much decision-making as she wants at every stage of her illness, and can be confident her wishes will be carried out even when she can no longer express them.

3. Sophisticated symptom control. Pain and other troubling or humiliating symptoms are managed aggressively and well. Narcotics are used without fear of addiction, and calibrated to balance what the patient determines to be good pain control with an acceptable level of sedation.

4. Limits are set on excessive treatment. Excessive treatment--defined as medical interventions that extend the process of dying longer than the person who is dying wants it extended--is not given.

5. A focus on preserving patient quality of life. Communication about treatment takes into account the patientís autonomy and how he defines "Self," and weights both the physical and existential questions of life: What does he most value? When are pain and loss of function so great they become intolerable? What constitutes a meaningful life? What constitutes loss of Self for the person who is dying?

6. Emotional support. Psychological issues are addressed, especially those having to do with depression, sadness, and loss. Attention is also paid to finishing old business and family reconciliation.

7. Financial support. Decisions about palliative care, acute medical care, home care, or long-term care are not dictated primarily by financial considerations. Costs are adequately covered, whether by public or private health insurers.

8. Family support. Decision-making occurs within the context of a functioning family, with attention paid to the needs of the family and primary caregivers as well as to the patient. Support is given so the family is not torn apart, and is provided according to that familyís system of values. There is a recognition of the need for family strength, an understanding that the good or bad legacy this death creates will endure in family lore.

9. Spiritual support. Spiritual issues are considered regarding what it means to this person to have a meaningful, dignified, and peaceful closure. Physicians, medical and care personnel, relatives and friends are open to the spiritual needs of the individual patient, however the specific patient might define them.

10. The patient is not abandoned by medical staff even when curative treatment is no longer required. The dying person does not feel isolated, nor does she have to die alone. Doctors and other medical personnel are supportive even when a cure is no longer possible, helping to manage dying well, through to the end.

In addition, the author suggests the following Guidelines for Symptom Control taken from Cecilís Textbook of Medicineís 1996 edition may be informative:

1. "Nothing matters more than the bowels." Daily assessment needed.

2. Control of one symptom improves control of all symptoms.

3. Most symptoms are caused by multiple factors. Psychological distress may augment all symptoms.

4. "Assessment must precede treatment."

5. Rule out correctable factors underlying each symptom.

6. Clarify who is bothered by symptom: patient, family, or staff.

7. Give simple explanation for each symptom to patient and family. Diagrams helpful.

8. Consider anticipated prognosis, functional status, and the patientís goals in determining appropriate treatment.

9. Discuss treatment options with patient and family and involve them in treatment planning where practical.

10. Determine what was helpful in the past.

11. Use a total-care approach employing nondrug, environmental, and other supportive measures.

12. If needed, use combination of pharmacologic agents when differing mechanisms of action and toxicity permit.

13. Prescribe drugs prophylactically in individually optimized, regular doses for persistent symptoms.

14. Never say "Nothing more can be done." Consult or refer if comfort is not achieved.

5.02 Definition: What is Suffering?

We frequently lump the terms "pain," and "suffering," but while pain is certainly a component of suffering, suffering is clearly more inclusive than pain alone. Similarly, we often find it difficult to differentiate suffering from distress. While few people who consider themselves to be suffering would not also say they were distressed, the opposite is not true. In health, distress need not produce a feeling of suffering. In the terminally ill, this is not likely to be so, the word "distress" usually being close to synonymous with "suffering," as they will be treated in this book.

Although it is hard to find a universally acceptable definition of suffering, the following references to "suffering" when thought of together should allow our readers to develop a reasonably similar concept of the topic of our discussion.

1. Suffering is a global experience of impaired quality of life.

2. Suffering is "the state of severe distress associated with events that threaten the intactness of the person." Intactness can relate to oneís very existence, oneís integrity, the ability to maintain oneís role in family and society, or oneís sense of self and identity.

3. "Suffering is the experiencing of severe psychological pain arising from medical or personal causes." Even more than with pain, an individual's experience of suffering reflects his or her unique psychological perception of reality. Because this experience is so subjective, people are often unaware of the causes or extent of another person's suffering.

4. "Suffering is the distress brought about by the actual or perceived impending threat to the integrity or continued existence of the whole person."

5. "Suffering denotes an extended sense of threat to self-image and life, a perceived lack of options for coping with symptoms or problems, a sense of personal loss, and a lack of a basis for hope."

6. "Suffering is the state of severe distress associated with events that threaten the intactness of the person." Suffering can include physical pain but is by no means limited to it. The suffering of patients with terminal cancer can often be relieved by demonstrating their pain truly can be controlled.

Together these definitions indicate that suffering (a) involves a perceived threat to the self which may involve the physical body, the psychic and social self, or both, (b) is inherently emotional, unpleasant, and psychological more than physical, and (c) constitutes an enduring psychological state, not a transient or fleeting experience.

Suffering in terminally ill patients typically results from multiple sources of diverse origins. Pain is likely to be a major factor, but the fear the pain cannot be relieved or the perception that it is indicative of a deteriorating physical condition may cause far more suffering than the pain perception itself. Biological signals of local distress is likely to cause much more suffering if it is perceived to indicate a worsening of the terminal illness as opposed to an unrelated cause.

Parts of a patientís suffering almost always involve general symptoms unrelated to pain -- like weakness, excessive fatigue, sleep disturbance, loss of appetite and weight loss -- but frequently also involves other more specific physical symptoms like nausea, constipation, and shortness of breath. At the same time, suffering frequently results from distress of psychic origin --like guilt, anger, frustration, perceived loss or helplessness, threat to self-image or body image, or simply the awareness of the threat of death -- all of which may produce or exacerbate an underlying depression. Finally, suffering frequently results from social problems -- isolation or a sense of abandonment, loss of social status and/or social influence, and the loss of self-esteem which follows the loss of ability to work and earn an adequate income for oneself and oneís family. These latter types of psychological distress are frequently referred to in medical articles as "existential suffering," and will be addressed separately later in this book.

5.03 Treating Suffering Related to Pain

With the physical ability to relieve pain discussed in previous chapters comes the added potential for relief of much of the psychological suffering experienced by terminally ill patients related to pain. To accomplish this goal requires physicians and other health providers to specifically address by their actions and in their words many of the unfounded beliefs commonly held by terminally ill cancer patients.

Most terminally ill cancer patients suffer from the fear that medical care is generally unable to control pain related to cancer. This makes rapid, total relief of the first pains experienced by cancer patients essential, not only because it is the right approach to pain relief in general, but because it serves to reassure the patient that cancer pain, like others, can and will be aggressively controlled. In contrast, allowing initial pain to go unrelieved or undertreated simply because it is likely to be relatively mild is a mistake, for it produces unnecessary anxiety for the future, thus adding to the patientís generalized overall suffering.

From a patientís perspective, one of the worst aspects of cancer pain is that it is a constant reminder of the disease, its inevitable progression and the approach of death. This makes the prevention of pain through anticipatory use of routine narcotic doses even more effective in reducing patient suffering than relief of pain on a "PRN basis," after the pain is experienced.

Unfortunately, patients with cancer invariably tend to lose hope when pain emerges or increases, believing it indicates the inexorable progress of the disease and failing to consider the effects of drug tolerance. It is therefore wise to note from the beginning that the dose of narcotics is likely to require increases from time to time even if the disease is not progressing as the body builds up tolerance, but that this will not mean increased side effects as the body will become tolerant with regard to the side effects as fast as it becomes tolerant with regard to pain relief.

Chronic unrelieved pain tends to decrease the patientís willingness to undergo active treatment programs, and, when severe or combined with depression, leads them to consider or to actually commit suicide. Because pain diminishes activity, appetite, and sleep, it can further weaken already debilitated patients while at the same time preventing patients from working productively, enjoying recreation, or taking pleasure in their usual role in the family and society.

To overcome these detrimental effects of pain and the fear of pain requires both aggressive therapy and active discussion of potential pain therapy between the physician, patient and family. If not previously addressed, the time of initial pain relief is often a good time for a heart to heart discussion between health care providers and the patient aimed at convincing the patient of a number of essential facts about pain management. First, that the physician not only has the ability to treat cancer pain, but that he or she intends to do so aggressively until the end-stages of the disease. [The patient must be reassured he or she will not be abandoned with pain.]

Second, that given proper use of modern pain therapies, even in the end stages of cancer, pain seldom becomes unrelieveable through modern pain therapy. And, even then, if the patient should happen to be one of the few whose pain cannot be relieved by traditional pain therapy, other ways short of assisted suicide have been developed to relieve their suffering.

Third, that narcotics are good, not bad. That there need be no fear of addiction. That the development of tolerance is not to be feared because dosage is unlimited and the development of tolerance in fact may tend to make treatment more effective. This should include the notion that proper narcotic dosing is unlikely to interfere with thought processes unless it is so desired by the patient.

5.04 On Death and Dying/Adapting to the Reality of Death

In 1969 Dr. Elizabeth Kubler-Ross, a Swiss born, U.S. educated psychiatrist working with terminally ill patients at the University of Colorado published On Death and Dying, a book based primarily on repeat interviews of 200 dying patients. In this book, which has become a mainstay in teaching about death and related suffering, Dr. Kubler-Ross describes five stages through which the normal person passes in coming to grips with the realities of impending death. Although not universally accepted as a model and not universally followed by all patients, it is frequently helpful to consider when living through the dying process with a loved one.

The first stage is characterized as "denial and isolation." Dr. Kubler-Ross describes this stage as follows:

"The patientís first reaction may be a temporary state of shock from which he recuperates gradually. When his initial feeling of numbness begins to disappear and he can collect himself again, manís usual response is "No, it cannot be me." Since in our unconscious mind we are all immortal, it is almost inconceivable for us to acknowledge that we, too, have to face death. Depending very much on how a patient is told, how much time he has to gradually acknowledge the inevitable happening, and how he has been prepared throughout life to cope with stressful situations, he will gradually drop his denial and use less radical defense mechanisms."

In characterizing this stage, Dr. Kubler-Ross notes the same reaction occurs if the patient is told straight out or if the patient comes to appreciate the reality of the situation over time. Although clearly a defense mechanism, initial denial "functions as a buffer after unexpected shocking news, [and] allows the patient to collect himself and, with time, mobilize other, less radical defenses." Although the predominant reaction in the early stages, the need to deny may come and go until the end -- meaning that a perceptive, sensitive listener will recognize denial when it exists and learn to accept it without forcing the patient to face reality until the passage of time makes it possible.

The second stage is characterized as "anger," and typically including rage, envy and resentment as well. Unlike denial, the stage of anger is difficult for the family to deal with, because the patient typically projects the anger in all directions, frequently striking out at anyone around as if they were the cause of the illness. "The visiting family is received with little cheerfulness and anticipation, which makes the encounter a painful event. They then either respond with grief and tears, guilt or shame, or avoid future visits, which only increases the patientís discomfort and anger."

Patientís in this second stage typically act to demand attention, raising their voices, making demands, loudly complaining as if to say, "I am alive, donít forget that. You can hear my voice, I am not dead yet!"

In dealing with patients in this stage, Dr. Kubler-Ross suggests:

A patient who is respected and understood, who is given attention and a little time, will soon lower his voice and reduce his angry demands. He will know that he is a valuable human being, cared for, allowed to function at the highest possible level as long as he can. He will be listened to without the need for a temper tantrum, he will be visited without ringing the bell every so often because dropping in on him is not a necessary duty, but a pleasure."

Stage three is characterized as a stage of "bargaining." In this stage, which is usually quite brief, the patient who was unable to face the facts in the first stage and found little gain in the anger of the second makes an effort to enter "into some sort of an agreement which may postpone the inevitable happening." It is as if the patient feels guilty about past ways and is now asking for time off for good behavior, usually offering to be good in the future and addressing the request for time in exchange in one way or another to God.

Stage four is characterized by Dr. Kubler-Ross as "depression," which she relates to two causes, "reactive" and "preparatory." The first type stems from reality and is easily recognized and understood, the need for treatments and hospitalization, the financial expenses, the loss of appearance, the loss of jobs and difficulty functioning. At times this type of depression can also be irrational, as when it is somehow related to guilt and/or shame.

In dealing with this reactive type of depression, it is reasonable to try to "cheer them up, to tell them not to look at things so grimly or so hopelessly. We encourage them to look at the bright side of life, at all the colorful, positive things around them. [Although] this is often an expression of our own needs, our own inability to tolerate a long face over any extended period of time ... [it] can be a useful approach when dealing with the first type of depression in terminally ill patients."

As to helping the patient who is going through the second type of depression, Dr. Kubler-Rossís suggestions are very different:

"When the depression is a tool to prepare for the impending loss of all the love objects, in order to facilitate the state of acceptance, then encouragement and reassurances are not as meaningful. The patient should not be encouraged to look at the sunny side of things, as this would mean he should not contemplate his impending death. It would be contraindicated to tell him not to be sad, since all of us are tremendously sad when we lose one beloved person. The patient is in the process of losing everything and everybody he loves. If he is allowed to express his sorrow he will find a final acceptance much easier, and he will be grateful to those who can sit with him during this stage of depression without constantly telling him not to be sad. This second type of depression is usually a silent one in contrast to the first type, during which the patient has much to share and requires many verbal interactions and often active interventions on the part of people in many disciplines. In the preparatory grief there is no or little need for words. It is much more a feeling that can be mutually expressed and is often done better with a touch of the hand, a stroking of the hair, or just a silent sitting together. This is the time when the patient may just ask for a prayer, when he begins to occupy himself with things ahead rather than behind. It is a time when too much interference from visitors who try to cheer him up hinders his emotional preparation rather than enhances it."

Dr. Kubler-Ross goes on to suggest it is important this stage be recognized by the medical profession, so they can advise the family "this type of depression is necessary and beneficial if the patient is to die in a stage of acceptance and peace. Only patients who have been able to work through their anguish and anxieties are able to achieve this stage. If the reassurance could be shared with their families, they too could be spared much unnecessary anguish."

The fifth and final stage, which is to be sought prior to death according to Dr. Kubler-Ross, is "acceptance." In this stage the patient is neither angry nor depressed. He or she will have been able to express envy for the living, mourned the loss of people and places and contemplated the coming end with a certain degree of quiet expectation. He or she will be tired, quite weak, will doze off and sleep at intervals no longer to escape pain, discomfort or itching, but almost as a sign they have given up the fight.

In advising the family on dealing with this state, Dr. Kubler-Ross suggests:

Acceptance should not be mistaken for a happy stage. It is almost void of feelings. It is as if the pain had gone, the struggle is over, and there comes a time for "the final rest before the long journey" as one patient phrased it. This is also the time during which the family needs usually more help, understanding, and support than the patient himself. While the dying patient has found some peace and acceptance, his circle of interest diminishes. He wishes to be left alone or at least not stirred up by news and problems of he outside world. Visitors are often not desired and if they come, the patient is no longer in a talkative mood. He often requests limitation on the number of people and prefers short visits. This is the time when the television is off. Our communications then become more nonverbal than verbal. The patient may just make a gesture of the hand to invite us to sit down for awhile. He may just hold our hand and ask us to sit in silence. Such moments of silence may be the most meaningful communications for people who are not uncomfortable in the presence of a dying person. We may together listen to the song of a bird from the outside. Our presence may just confirm that we are going to be around until the end. We may just let him know that it is all right to say nothing when the important things are taken care of and it is only a question of time until he can close his eyes forever. It may reassure him that he is not left alone when he is no longer talking and a pressure of the hand, a look a leaning back in the pillows may say more than many "noisy" words.

In the following years Dr. Kubler-Ross expanded her initial five stages to encompass two more. The first she referred to as "finishing old business," during which one learned to finally drop oneís emotional baggage of jealousies or resentments and to make an intimate, heart-to-heart connection with love. In the second, referred to as "transcendence," the dying patient develops a kind of love that is not just one-on-one, but universal, encompassing the vastness of life and humankind.

How hard it can be for the family. How hard to accept that

a dying man who has found peace and acceptance in his death will have to separate himself, step by step, from his environment, including his most loved ones. How could he ever be ready to die if he continued to hold onto the meaningful relationships of which a man has so many? When the patient asks to be visited only by a few more friends, then by his children and finally only by his wife, it should be understood that is the way of separating himself gradually.

5.05 Suffering in the Terminal Illness and End-Stage Disease

Most people think of the terminal disease as spanning a time frame set in weeks, but that is only true if we define "terminal" so as to limit its scope to the truly end-stages of an illness. If, however, we define "terminal" as we do in this book, in terms of a "progressive and incurable" disease, the illness is likely to span months and even years, making it essential that we think in terms of relief of suffering in relation to a time continuum.

If, for example, an MRI or CT scan shows a newly discovered cancer is incurable from the time it is first diagnosed, we should not necessarily expect there will be a rapid progression of disease, for many tumors are slow growing. If this be the case, the presence of cancer may not even mean the patient will develop significant physical symptoms over a short period of time, for many cancer patients are symptom free for months to years. During this period, most patients are best thought of and related to as normal in order to minimize the non-physical "existential suffering" which accompanies the knowledge that one has a fatal illness.

What is equally true, however, is that once tumor growth reaches the point when the patient enters the phase of weight loss, weakness, and lethargy typical of end-stage disease, infirmity and dependence is likely to progress quickly and life expectancy is likely to be measured in a few months at most.

It is therefore important to differentiate what usually happens in the last few days of life from thinking about what happens during the earlier course of the "terminal disease process," prior to the events we typically associate with end-stage disease. As part of this, it is important to differentiate reports about symptoms during the last few days or hours of life, in which physical suffering is likely to be the major concern, from all the time between diagnosis and the terminal events, when most suffering is of a psychological nature.

 

 

 

A. End-Stage Physical Suffering

This over-all section of the book addresses physical suffering throughout terminal illness, but if we look more specifically at physical suffering during end-stage disease, we will find that the percentage of patients experiencing significant weakness, sleepiness and fatigue, has increased from approximately 50% to approximately 80%. During this period, a little over half experience significant pain, although few experience severe pain unresponsive to therapy. In the last few days, even when pain is generally well controlled, it is not uncommon for patients to suffer pain only on movement, even if deeply unconscious. At one time it was said that many patients died in a "crescendo of pain," but this does not seem to be true in modern medicine, perhaps because of the great improvements in pain management.

Shortness of breath is also common as a terminal event, occurring in approximately one quarter of patients during the last month of life. In the last few days, congestion of the lungs is also frequently evident even to visitors, typically producing a sound which has been called a "death rattle." Nausea and constipation are common throughout the last month, with dry mouth and difficulties in urination, either inability to urinate or inability to hold the urine, being more common in the last few days of life.

In spite of these considerable problems, the experience of hospice providers shows that even in the last few weeks and months of life, dying persons are much more commonly distressed by the same concerns they have earlier in the course of their terminal illness -- the fear of pain, loss of control, indignity, a weariness with life, the absence of self-worth when not being productive, and a desire not to burden family than actual physical or psychiatric symptoms.

B. Mental Suffering

Again looking more closely at the end-stage of disease, the typical worried anxiety noted to be present in approximately one quarter of patients in the earlier stages of a terminal illness is likely to be replaced during the last few days with symptoms more suggestive of agitated anxiety, such as restlessness, irritability, jerking, twitching, and plucking. Whether these symptoms are related to true anxiety or to chemical changes in the brain which cause such movements is typically hard to tell.

In addition, approximately 25% of patients experience at least intermittent confusion during the last month of life, with some increase in the last few days, especially when increased doses of medication may be required. In contrast, depression is much more common earlier in the course of terminal illness than in the final phases, when the typical patient has accepted the finality of approaching death.

Although not usually considered a mental illness, fear is probably even more common than anxiety, confusion, or depression during the final weeks of illness. Fears regarding loss of autonomy, disfigurement, being a burden to their family, letting the family down, facing the unknown, and loss of cognitive function which are likely to have appeared earlier are likely to continue into the final month of illness. As the end stage approaches, however, different fears are likely to become more important, such as having to experience pain, shortness of breath, nausea and vomiting, loss of appetite and isolation.

C. Existential Suffering

In trying to explain suffering in the terminally ill, commentators have carefully separated out the concept of "existential suffering" from both physical symptoms and mental illness, although they certainly have strong interactions. Those forces which are recognized to exert existential suffering have in common a challenge to "self," the patientís actual or perceived threat to his or her own identity and integrity. Looked at another way, existential suffering calls into question the continuity of the "I" by which individuals refer to themselves. Frequently, as death approaches and comes to be "accepted," these major concerns of the previous period become less pressing, but in some patients they persist to the end.

Problems related to existential suffering are the most difficult for physicians to treat, for they require the most individualistic approaches. Unlike pain, nausea, shortness or breath, fear, anxiety, confusion, and depression, there are no medicines for a threatened loss of self-image, but there still remain proven approaches to be taken by caregivers to relieve or minimize the suffering. In general, such efforts can be summarized as undertakings to maintain the patientís autonomy and to counteract the patientís natural feeling of diminished control of oneís own life.

Discussing existential suffering, Courtney S. Campbell, a Professor of Ethics at Oregon State University stated [in Suffering, Compassion, and Dignity in Dying, 35 Duq. L.R. 109, 119 (1996)] says:

It is through acknowledging existential suffering that society can make some sense of the lament, "my world is coming apart." This form of suffering seems to deprive the sufferer of all that is most humanly meaningful in life: relationships, memory, creativity, communication, a responsive body, autonomy; in short, precisely those characteristics that might well constitute an individual's sense of "dignity."

Existential suffering represents not only a threat to the autonomous self but also implicates the claimed liberty interest of terminally ill persons in a right to die.... "At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life." In the ordeal of existential suffering, however, it is precisely an individual's concept of existence and understanding of meaning that is under siege. The individual's universe and world is conceptually "coming apart," and he or she has no answers for the mystery of his or her own life, let alone human life in general. The sufferer winds up asking ... "why these torments," and finding an answer equivalent to, "for no reason--they just are." Confronting this abyss of meaninglessness can be almost too intimate and personal for the patient to bear.

If such suffering could be relieved by medicine, of course, then all would be conducive to a peaceful and dignified death. What drug or medication is there, though, that can alleviate this rupture of an individual's self and world? Society needs to understand that while medicine certainly can prevent or remedy the occasions out of which suffering arises, the experiences of suffering, mortal or existential, are not so medically malleable. What is needed in these circumstances is a different kind of response, a human response that can be given professional direction; the response of compassion.

Common existential issues for patients with advanced disease include hopelessness, futility, meaninglessness, disappointment, remorse, death anxiety, and disruption of personal identity. Easily recognized sources of this suffering include losses of privacy, lifestyle and established routines; the destruction of one's sense of security and sense of normalcy; the painful awareness of one's former physical powers and present incapacities; the dreaded anticipation of future mental and physical deterioration; the loss of control over one's life and life plans; the unwanted dependence on machines and doctors; the loss of home and of social roles in the outside world brought about by institutionalization; the loss of hope, of optimism about the future, and of pleasure in life, and a realization one is destined "to witness and endure a final stage not as an effective agent, but merely a deteriorating object."

5.06 Effects of Suffering on Others

Terminal events can precipitate a kind of social death in which there is loss of contact with others, most notably at times, physicians. Isolation of the incurably ill, even in busy hospitals, is common. The desire for distance from the dying, doctors' priorities in caring for those with a reasonable chance for recovery, the monetary reward system, time pressures, and other personal and institutional factors all contribute to what one physician has called "a miserable job of caring for the dying" performed by the medical system.

Patients and their families also suffer the stress of mounting emotional and financial burdens. The wish to avoid depletion of family resources may motivate some to seek a quicker rather than slower death. Few mothers and fathers would want to leave behind an impoverished family. Many would also not want to feel responsible for ruining the quality of life of a family member who would have to serve as a caretaker during an arduous, chronic fatal illness.

Finally, people have an interest in how they will be remembered. The manner of one's death may overshadow other facets of one's life, to the point of haunting loved ones who witness an intolerable death. Justice Stevens, dissenting in the U.S. Supreme Court decision commonly referred to as "Cruzan," suggested this interest was of supreme importance by writing:

Nancy Cruzan's interest in life, no less than that of any other person, includes an interest in how she will be thought of after her death by those whose opinions mattered to her. There can be no doubt that her life made her dear to her family, and to others. How she dies will affect how that life is remembered. The trial court's order authorizing Nancy's parents to cease their daughter's treatment would have permitted the family that cares for Nancy to bring to a close her tragedy and her death. Missouri's objection to that order subordinates Nancy's body, her family, and the lasting significance of her life to the State's own interests. The decision we review thereby interferes with constitutional interests of the highest order.


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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