CHAPTER 7. MENTAL SUFFERING IN THE TERMINALLY ILL

7.01 Frequency of True Mental Illness in the Terminally Ill

7.02 Specific Mental Conditions Related to Terminal Illness

A. Anxiety

B. Depression

C. Therapy of Depression

(i) Drug Therapy

(ii) Psychiatric Care

(iii) Family Care

7.03 Existential Suffering

A. Definition

B. Factors in Existential Suffering

C. Applicability of Medical Treatment to Existential Suffering

7.04 Specific Fears

A. Pain

B. Death

C. Physical Symptoms Other Than Pain

D. Being a Burden on Others

E. Family Desertion

F. Abandonment by Physicians

G. Loss of Standing or Status Within One,s Profession, Family, and/or Community

H. Losing Mental Ability

I. Narcotic Addiction

J. Loss of Dignity During the Process of Dying

K. Being, Or Being Considered, A Worthless Individual

7.05 Other Causes of Existential Suffering

A. Inability to Obtain, Evaluate and Use Information

B. Loss of Ability to Control One,s Bodily Functions/Loss of Dignity

C. Loss of Ability to Maintain Access to One,s Family or Society

D. Loss of Ability to Control People Formerly Controlled by the Patient

E. Hopelessness

7.06 Stressing Past Accomplishments

7.07 Helping Establish Closure

7.08 Helping Patient with Unfinished Family Business

7.09 Being There

7.10 On Showing Compassion

7.11 Choosing Appropriate Caregivers to Question the Patient

7.12 Working Through Problems/The Physician,s Role

7.13 Specific Suggestions

A. Maintaining Appearance

B. Helping Maintain Function

C. Adding Meaningfullness to Life

D. Stressing Pleasure

E. Honoring Privacy

7.01 Frequency of True Mental Illness in the Terminally Ill

Mental problems are normally differentiated as being psychotic, neurotic, or based on a personality disorder. Terminally ill patients may manifest these same types of psychiatric disorders, either as a residuary from the past or as a result of stresses related to the terminal illness, but the very presence of the illness and its overwhelming effect on the patient,s mentation makes it much more difficult to determine the presence of a co-existent mental disorder. Instead, we tend to look at changes in the thinking of terminally ill patients not in terms of a separate disease process but as the result of the patient,s response to the realities surrounding approaching death. And, because there are such great differences in how patients face death, we accept almost any response as being within the limits of normal and not indicative of a separate psychiatric illness.

When looked at more closely, however, studies conducted primarily on terminally ill patients with cancer suggest that approximately fifty percent also suffer from a separate diagnosable psychiatric illness, but this is of little help to the clinician. For example, patients with associated psychiatric disease are said to be more likely to report severe pain than those who are judged to be free of psychiatric illness, but it is unclear whether they suffer greater pain because they are also mentally ill, or whether they are more likely to show signs of mental illness because they have more severe pain.

The most difficult problem when trying to evaluate mental illness in the terminally ill relates to "depression." Most layman and many physicians, tend to consider "depression" and "unhappiness" to be essentially the same, but most psychiatric practitioners tend to look on them as different. They tend to separate the two by relating "unhappiness" to sad feelings based on a realistic evaluation of one,s situation, while limiting the use of the term "depression" to those situations in which the sad feelings come primarily from within, either unrelated to outside reality or significantly out of proportion to reality. Based on this differential, to determine when sadness qualifies as depression requires a determination of what is the natural degree of sadness one would expect from learning one is shortly going to die -- clearly, a most difficult determination.

Fortunately, trying to make this differential has become less important in recent years with the development of newer anti-depressant medications which, unlike the older drugs, tend to act as mood elevators in patients who are technically "unhappy" as well as those who are "depressed." If, however, we use this broader definition of depression to also include "unhappiness," it is fair to say that close to ninety percent of patients will suffer from a depressed state at some time during their terminal illness.

We should not, however, get caught up in the question of definitions. The exact frequency of mental illness in the terminally ill is unimportant. Of primary importance must be attempts to prevent or minimize its occurrence, by avoiding drugs with unwanted mental side effects when possible, by recognizing drug effects early when they are used, and, most of all, by treating pain aggressively so as to avoid the mental effects which result from living with chronic pain.

In this chapter we will discuss some of the specific mental conditions frequently seen in the terminally ill, stressing in particular those types which stem naturally from having to deal with the reality of approaching death. Such mental suffering is commonly referred to in the medical literature as "existential" in origin because it relates to the end of mortal existence.

7.02 Specific Mental Conditions Related to Terminal Illness

A. Anxiety

Anxiety can be thought of as an inner feelings of tension, apprehension, and/or worry. It commonly causes symptoms such as restlessness, sweating, trembling, overactivity, over awareness of one,s environment, trouble sleeping, frequent distractions, shortness of breath, tingling and numbness, especially in the hands, arms and face. Because symptoms of anxiety can be caused by physical problems common in the terminally ill, these need to be considered and evaluated before it is assumed the symptoms of anxiety are related to a mental condition. Some of the physical problems which are likely to cause symptoms suggestive of anxiety include hypoxia (decreased oxygen in the blood), infection, blood abnormalities, bleeding, drug reactions, and drug withdrawal, especially the withdrawal of pain medications and steroids. In addition, inadequately treated pain or uncontrolled shortness of breath very commonly cause anxiety for which increased narcotics is usually the best and most effective treatment.

Terminally ill patients understandably become anxious as a result of persistent symptoms, the need for constant medical care, the recurrent crises which arise around new symptoms, problems in arranging care, and the uncertainty and fear about the process of dying and how it will be handled. A certain level of anxiety should therefore be expected and the patient given time to work through the realities. Patients who continue to experience high levels of anxiety for weeks or months, however, should be offered the possibility of therapy, either through referral to a psychiatrist, psychologist, psychiatric nurse, or psychiatric social worker, or with the use of anti-anxiety (tranquilizer) drugs.

In many cases, family members can also be very helpful in exploring and relieving many of the patients, concerns, acknowledging the uncertainties of the situation, and reassuring the patient they and the health care team will be there to support them through the end-stages of their disease. When drug therapy is used, it most commonly involves the use of the so-called "minor tranquilizers" of the benzodiazepine family, such as lorazepam (Ativan), alprazolam (Xanax), and oxazepam (Serax). On occasion, when oral medication cannot be tolerated, diazepam (Valium) can be used as a rectal suppository for the control of anxiety, restlessness, and agitation. If simple tranquilizers are not appropriate or helpful, major tranquilizers like haloperidol (Haldol) or anti-depressants [discussed below] may be effective.

B. Depression

Sadness is understandably common in patients who learn they have a terminal disease, making it difficult to determine when medical intervention in the form of psychiatric referrals or drug therapy for depression is indicated. This is also a matter in which individual patients, families and physicians are likely to have great variance of opinions, as many people consider it advisable to "work through" the difficult times associated with impending death, while others take the attitude that when life is short, rapid improvement of mood should be sought without worrying about the working through of problems.

In order to determine when intervention is appropriate, many health care providers try to differentiate minor from major depression, the same as they would in physically healthy individuals, but this often fails in the presence of a newly diagnosed terminal illness. Experience with cancer patients indicates that with the initial diagnosis, patients often respond with either shock and disbelief or with denial of the diagnosis. Subsequently, patients frequently experience sadness or depressed moods along with anxiety, at which time they may be expected to suffer the usual symptoms of anxiety and depression -- changes in appetite and sleep patterns, agitation, loss of interest in daily activities, complaints of tiredness, feelings of guilt, inability to concentrate and recurrent thoughts of death or suicide. Most typically, these symptoms decrease over a period of two to three weeks once the patient is receiving treatment for the underlying disease and/or has adjusted to his or her situation, but may recur at times of increased stress when undergoing therapy or when recurrences of cancer are found.

Such mental reactions to the knowledge of a limited life expectancy are generally viewed as indicating normal adjustment problems under the circumstances and not requiring medical intervention, but when symptoms persists or seem to get worse with time, psychiatric evaluation is often felt to be advisable.

In order to speed up the determination of when psychiatric intervention is indicated, many attempts have been made to separate the normal from the abnormal process in the terminally ill patient. As a result, investigators have determined that while certain symptoms tend to overlap the normal and abnormal, others are particularly likely to be present with an abnormal, true depression. Common symptoms of depression which are likely to be unreliable in the terminally ill include agitation, complaints of fatigue, loss of appetite, sleep disturbances, weight loss, decreased concentration and social withdrawal. In contrast, a prolonged feeling of hopelessness and despair usually suggests abnormal depression, as does a feeling of helplessness, worthlessness, loss of self-esteem and guilt. Likewise, the desire to commit suicide, unlike just thinking about suicide, is likely to be associated with significant degrees of depression even in terminally ill cancer patients.

Other clues may also be helpful in separating normal unhappiness from abnormal depression in the terminally ill. The unhappy patient typically tends to exhibit sadness and grief but there are interrupting moments of more normal feelings and even of pleasure at times depending on the happenings of the moment. In contrast, the truly depressed patient tends to have an all pervasive, unrelenting quality of sadness unchanged by ongoing events. Patients who are truly depressed more frequently give a personal or family history of depression or substance abuse. Finally, potential clues to depression include complaints of pain or other symptoms which seem excessive to the observer along with a history of poor cooperation with planned treatment plans for the same symptoms.

The delayed thinking processes we normally associate with depression may be particularly troublesome in the terminally ill because this is often a time when important decisions must be made in a timely manner. As a result of the depression, the patient,s awareness and reasoning is likely to be influenced by a resultant unrealistic low self-regard, feelings of being deprived and rejection (even in the face of bountiful affection), and a tendency toward self blame with no logical basis. Moreover, patients suffering from depression are not only likely to be delayed in decision-making, their decisions are likely to be systematically biased against interventions of any sort. When seriously or terminally ill and depressed, a patient's reasoning process is thus impaired so as to deny the patient the ability to make well-considered life-and-death decisions. Furthermore, this tendency toward guilt and lack of self-assurance are likely to make the terminally ill patient more vulnerable to the suggestions of others, thereby increasing the potential for abuse.

One added difficulty in evaluation of a terminally ill patient for depression relates to thoughts about suicide. In physically healthy depressed patients, thoughts about suicide are considered indicative of more severe disease, but this may not be true in terminally ill patients since almost all terminally ill patients at least think about suicide at some point in the course of their illness. These thoughts can therefore be considered almost normal, considering the overwhelming sense of hopelessness or helplessness typical of terminal illness. In fact, for some patients consideration of the suicide option may provide a much desired sense of control -- a "way out" if things get too bad. Fortunately, when offered personal support and palliative care, most patients adapt and continue life in ways they might not have anticipated, often finding remaining days more precious as they become less numerous.

Confusing the issue even further are financial consideration which may surreptitiously undermine the patient,s thinking about terminal care, often giving a false impression of having given up on life. Reality confirms that death is cost-effective, leading many terminally ill patients to refuse expensive care for themselves in order to avoid a depletion of assets to be left their family after death. Because they realize explaining their reasons for refusing care is likely to upset their families, such patients are likely to mislead the family with false information, often suggesting the refusal is closely related to depression.

C. Therapy of Depression

The following discusses potential therapy for clinical depression among patients who are terminally ill. As indicated above, it is often difficult to differentiate true mental depression from the sadness we associate with the realities of approaching death. The following therapies, although always discussed in terms of depression, may, in fact, be equally effective in helping patients who are justifiably unhappy.

(i) Drug Therapy

Before drug therapy is undertaken for depression in the terminally ill, care must be taken to exclude the possibility there is a physical cause for the symptoms of depression, such as poor oxygenation of the blood or thyroid problems. In addition, one must be sure the depression is not a reaction to drugs such as steroids, cancer chemotherapeutics, cimetidine (Tagomet), indomethacin (Indocin), and sedatives like phenobarbital.

Patients displaying continued symptoms of despair and depression should probably be given the benefits of at least a trial with anti-depressant medication. In the past, the most commonly used antidepressants were from the group referred to as "tricyclics," including amitriptyline (Elavil), imipramine (Tofranil), trazodone (Desyrel) and doxepin (Adapin, Sinequan) among others. More recently, patients have generally been given drugs from a class referred to as "SSRIs," such as fluoxetine (Prozac), sertraline (Zoloft), paroxetine (Paxil), and bupropion (Wellbutrin-a slightly different class of drugs) which have the advantage of acting more quickly with fewer side effects and perhaps greater effect in patients who would be more properly classified as unhappy than depressed. On occasion, drugs which primarily stimulate the body may be effective. These drugs include dextroamphetamine (Dexedrine), methylphenidate (Ritalin), and pemoline (Cyclert). A third group of anti-depressants, the MAO-inhibitors, should not be used in patients receiving narcotics and are therefore seldom used in the setting of terminal illness, although they may be effective in certain specific situations.

Although it is often hard to determine the effectiveness of antidepressant therapy in terminally ill patients, it has been stated that marked improvement is likely to occur in approximately one-quarter of users.

 

(ii) Psychiatric Care

Although psychiatric referral is frequently undertaken in terminally ill patients, time factors and general debility of the patient usually tends to a preference for at least a trial of drug therapy first. To the extent sadness relates to the realities of the dying process, the most effective psychotherapy is generally thought to be time -- not the passage of time, but time given by the psychiatric team to the patient and family to help them deal with the emotional and spiritual aspects of their impending loss.

When the patient is preparing to die, there usually comes a time when the patient wants to forget the struggle to live a few extra days to concentrate on emotional problems inherent in death. At these times, providers trained in psychotherapeutic techniques can be most helpful. Members of the health professions as well as families should be aware of this particular stage undergone by most terminally ill patients, and should also try to help the patient deal with the discrepancies and conflicts which can exist between the patient and the rest of the world. Physicians and families should realize these types of distress are a necessary and beneficial part of the dying process if the patient is to die in a state of ultimate acceptance and peace. Most patients who work through their anguish and anxieties are able ultimately to achieve a state of passive resignation. In addition, when the process is understood, it can be of great comfort to families, sparring them unnecessary anguish.

(iii) Family Care

Initial sadness in the terminally ill usually stems from realities closely aligned to the situation itself -- the need to endure pain and disfigurement, the costs, the loss of financial income, etc. This type of sadness should usually be addressed by the family in a reassuring manner, by trying to get the patient to look at the brighter side of life, and offering what reasonable hope can be given without making false promises that all will be well.

As time goes on another type of sadness develops in most patients which is not related to immediate changes but is more an anticipation of what is to come as the patient prepares a final separation from the world. The patient is in the process of losing everything and everyone he or she loves, and it is only natural such a threat should evoke sadness. At this time, quiet reassurance of love and an intention to remain available to help becomes the most important aspect of therapy.

 

 

 

 

7.03 Existential Suffering

A. Definition

The term "existential suffering" is a relatively new term being used extensively in both medical and psychiatric articles to indicate a form of mental suffering which is now considered to be both normal and treatable. In its simplest terms, it refers to the suffering which the terminally ill individual experiences when faced with the reality that his or her existence in this world is about to end. A famous scholar on these issues, E.J. Cassell, defined "existential suffering" as "involving a perceived threat to the integrity of the self, helplessness in the face of that threat, and exhaustion of psychosocial and personal resources for coping." Surprisingly, even though this definition seems more complicated than one would like, other authors continually refer back to Cassell,s definition, which does seem to encompass the basic factors involved -- (1) the realization the self is about to end as an entity, (2) the inability to avoid this loss of the individual self, and (3) the inability of many to accept that one can no longer control one,s own existence. Among those feelings expressed by terminally ill patients which are commonly included as part of existential suffering are hopelessness, futility, meaninglessness, disappointment, remorse, death anxiety, and disruption of personal identity.

Existential suffering is particularly important in the context of this book because it not only leads to suffering in the patient, but is also a frequent cause of frustration in the family. As the patient,s suffering becomes increasingly evident, family members tend to look to health professionals for help, which is often not forthcoming. At this point, the resultant frustration in watching a loved one suffer leads to a tendency to blame the medical profession for its failures to meet the needs of their dying loved one, which then leads to increased anger and frustration. To avoid the disruption of patient care which is likely to result, certain truths need to be accepted, even if they are difficult for most families to accept.

First, existential suffering is normal and need not be totally controlled. In fact, over control can lead to increased suffering if the patient is not allowed to work through his or her problems related to death.

Second, there is no effective drug therapy for existential suffering. Because it frequently occurs with and is made worse by pain, physical symptoms, anxiety, and depression, adequate treatment of these attendant symptoms may greatly decrease the level of suffering, but will not remove the realities each individual must face.

Third, recognition that the patient,s existential suffering also causes suffering and frustration in health care providers as well as the family is essential in working together in trying to help the patient cope with his or her reality.

Fourth, recognition of the factors that add to the patient,s suffering is often helpful in planning an appropriate approach to fulfillment of the patient,s needs.

Fifth, most means of relieving patient suffering are equally valid for family and health care providers. Rarely are the means of helping solely within the sphere of medical expertise, although the authority of the physician may be of particular importance in lending credibility to reassurances offered the patient.

Sixth, when dealing with existential suffering, one needs to recognize the difference between fears of the dying process and fears related to being dead. As caregivers, we must determine which of these fears is actually being expressed by the patient in order to be effective in diminishing the patient,s suffering. While the position of professional caregivers tends to give them credibility when discussing the dying process, it does not give them expertise regarding what it is like for the individual after death occurs.

B. Factors in Existential Suffering

Among the causes of existential suffering, fear is certainly a major, if not the major, contributor. Fear of pain. Fear of physical distress and suffering. Fear of becoming a burden to others. Fear of family desertion. Fear of abandonment by physicians. Fear of losing one,s standing or status within one,s profession, one,s family, or one,s community. Fear of losing one,s mental function. Fear of becoming addicted to narcotics. Fear of losing one,s dignity in the process of dying. Fear of being, or of being considered, a worthless individual. And fear of death itself.

Outside of fear, many consider the leading contributor to existential suffering to be loss of personal control. Loss of the ability to obtain, evaluate and use information. Loss of the ability to express choices among options and to see they are followed. Loss of the ability to control one,s body in such a way as to preserve one,s own dignity. Loss of privacy. Loss of the ability to maintain access to one,s family or society. Loss of the ability to control the people who formerly fell under the patient,s control.

Another major contributor to existential distress involves the reality that time is short and one,s accomplishments in life are about over. This leads to a natural tendency to try to catalogue one,s success and failures in life and, inevitably, to the need to accept one,s failures -- financial, occupational, societal, and interpersonal.

C. Applicability of Medical Treatment to Existential Suffering

It is much easier for health providers to treat physical or even mental symptoms than to help a person hold together when everything in life seems to be falling apart -- to help maintain or restore a person,s self when faced with irreversible illness and the approaching loss of "self" as thought of among the living. To achieve this latter goal requires supreme efforts on the part of all those involved in caring for the terminally ill patient and the ability to overcome one,s own feelings of suffering and frustration when dealing with the dying patient.

When healthy people think of death, they typically think in terms of what it will be like after they die. Some think in terms of heaven and hell, others of nothingness, but their thoughts typically involve the absence of life and not the dying process itself. In contrast, studies have shown that when terminally ill patients think about death, they predominately think about the dying process itself. Fears are likely to revolve more around pain, physical suffering, loss of dignity and control, abandonment at the end of life, etc. than what it will be like to be dead.

What then can we do? We can begin by trying to understand the patient,s individual concerns apart from our own, or what we assume our own concerns would be, for they are likely to be very different. The big need is taking the time and being an active listener, for once the concerns are identified, the potential solutions, if they exist, are usually readily apparent. Just as important, when there are no solutions, this is also readily apparent, a great benefit for the caregiver who may now be able to escape the guilt felt when unable to relieve a loved one,s suffering.

The rest of this chapter considers the various factors discussed and what can be done once those playing a part in the individual,s existential suffering have been identified.

7.04 Specific Fears

A. Pain

Fear of pain is perhaps the most universal factor causing existential distress in the terminally ill patient, even more than pain itself. Such patients need to be reassured pain will be controlled even to the end of their life. This is primarily the role of the physician, but the family also has a critical role, to

(a) point out to the physician the need to reassure the patient initially and whenever the fear is expressed by the patient, even if this is frequent and suggests lack of trust in what has previously been said,

(b) learn the basic principles of pain management and accept that relief of pain is even more important than prolonging life, and

(c) reassure the patient the family and the involved physicians have agreed to honor the patient,s wishes regarding pain management in the future.

Remember, although physicians recognize that reassurance is part of their role and expect the issue to be raised, they may be reluctant to be the one to raise the issue for fear of producing more concern on the part of the patient. Remember also that the best time for the patient or family to raise the issue may not be the best time for the physician. The physician asking the patient "what are your thoughts about what the end will be like?" or "what are your fears about how the end will be like?" is likely to lead to a time-consuming discussion which should only be initiated by a physician who has time to respond at length. If initiated by the family at a time when the physician does not have time to follow through on the resultant discussion, it is only likely to lead to increased anxiety for the patient.

Fortunately, because of the major advances in treating the pain of terminal illness, given the necessary time, a knowledgeable physicians will almost always be able to honestly reassure the patient his or her fears about pain are unjustified. Simple reassurance from a physician with a statement like: "My job is to make sure you remain comfortable and will not have to suffer bad pain," has been repeatedly shown to be remarkably effective in relieving this fear in both patients and families, although repetition is frequently required.

At times, however, even with repetition, patients fail to accept reassurances about pain, often expressing their continued anxiety by claiming they had heard of a case when pain, shortness of breath, or some similar condition went unrelieved at the end. When this happens, physicians must be prepared to take the time to convince the patient this will not be the case. Physicians know such stories are almost always the result of misunderstanding, that they lack some important details, but arguing about the story is seldom productive. Instead, it is usually wiser for the physician to admit failure to control symptoms with traditional therapy can occur, but even when specific symptoms may escape control, there are means to control the overall situation by giving enough medication to induce a kind of continuous dream sleep which makes the patient unaware of the symptom.

If family or friends are aware the patient intends to challenge the physician with a story of unrelieved pain, it is wise to warn the physician. When this is done, the physician and the family can discuss the possibility of terminal sedation [discussed later in this book] in those rare instances when traditional therapy is ineffective in controlling symptoms before taking this discussion to the patient. Having this chance to discuss terminal sedation with the family first makes it easier to reassure the patient knowing there will not be later disagreements with the family if it needs to be instituted. Then, discussing it with the patient can produce a three way agreement of what can and will be done at the end if required, thus avoiding the later appearance that terminal sedation amounts to abandonment.

Having given the patient reassurances about pain relief in end-stage disease, it becomes imperative for the health care team to react quickly to relieve symptoms which do arise to insure credibility be maintained. For this reason, many palliative care specialists recommend overtreatment of pain at the beginning even if it produces sedation which requires subsequent lowering of dosage just to impress the patient with the physician,s ability to control pain when required.

At the same time, such reassurances can be undermined by anything which causes the physician,s loss of credibility. To prevent this from happening, families should make efforts to keep health care providers aware of new or increasing pain so appropriate pain therapy can be planned and undertaken in a timely manner, while physicians need to show interim pain can be controlled if the patient so chooses. Patients may choose to suffer some pain in order to remain more alert, but when more pain relief is requested, it should be given quickly to retain confidence in the patient/physician relationship.

Families must also act to maintain the physician,s credibility by not making disparaging remarks about health care providers in front of the patient. Telling the patient the physician has not returned four phone calls about the potential need for vitamin supplements will only lead the patient to worry later phone calls requesting pain relief will also go unreturned.

[Note: To maintain credibility, both families and physicians need to continue to recognize that many patients who appear to be in coma are not. Although their eyes are closed, they can hear what is being said. This may allow thoughts to purposely be expressed to comfort the patient, but unless carefully orchestrated, is more likely to lead to overheard conversations which should have been held in private.]

B. Death

We all think at times throughout our life of what it will be like to be dead. For some, faith in an afterlife is very reassuring, but for most of us, even those who consider themselves religious, there remains fear of the unknown and nothing is as unknown as what it is like after death.

One of the major causes of existential suffering is the inability to escape these thoughts. When we are healthy, we normally think periodically about death only to dismiss the thoughts for later consideration. This becomes ever more difficult to do when the time remaining is clearly running out. When one is dying, it is hard to repress thoughts about what lies ahead.

For caregivers, fears related to being dead are particularly difficult to relieve. Unlike the process of dying, where much is known and we can speak reassuringly about symptom relief without losing credibility, the fact that no one has verified knowledge regarding life after death denies the credibility needed for patient reassurance. Accepting the reality of death is a lonely battle for each individual. One that may be helped by skilled intervention by pastoral care or gifted counselors, but one fraught with difficulty when undertaken by physicians or family members.

C. Physical Symptoms Other Than Pain

Fear of physical distress from symptoms other than pain, such as nausea and shortness of breath, require similar reassurance from physicians that relief will be available if and when it is needed. Again, to maintain credibility, palliative care must be initiated promptly when symptoms do occur. In these situations, as well as in therapy for pain, terminal sedation may also be suggested as an alternative if required.

At times patients with great fear of discomfort in the end stages of their disease will raise the question of physician assisted suicide. If families are aware that this may be mentioned or is being considered by the patient, they should tell the attending physician and discuss his or her thoughts on how to aid the patient if required through the end stage of disease. Some of the alternatives are discussed later in this book. If the patient truly wants to control the end of his or her life, the possibility of voluntarily stopping food and fluid intake can be discussed with the patient after the family and physician agree to accept the patient,s desire to do so. Frequently, an explanation of how the concept of "double-effect therapy" legalizes relief of symptoms can be reassuring to the patient who fears legislation limiting assisted suicide limits the ability of the physician to relieve symptoms. This may also be a time for discussion of the possible use of terminal sedation if required for terminal symptomatic relief.

D. Being a Burden on Others

Many patients refuse help from family and friends wanting, and claiming, to be independent. This is fine and should be encouraged as long as the patient is capable, but at some point in the course of most terminal illnesses, this capacity is lost. When this occurs, remember the fear of burdening others often relates to not feeling worthy of other people,s time and efforts, even though in reality it is often the people who have done the most for others who feel the least worthy and vice versa. Do not assume the patient who has been giving all their life understands they are due help now. Instead, remind them it is a privilege to return some of the aid they have given you and others in the past.

When a patient expresses concern about being a burden on others it is important to respond in such a way as to minimize the reality -- but do not deny it. More importantly, as previously mentioned, point out that responsibility can be a privilege when it relates to someone you love or to whom you owe a great deal. A chance to pay back what is owed for all they have done in the past. "You fed me when I was young and again whenever I was sick. This gives me a chance to pay you back. It is a privilege, not a burden." "You were there for me and my children when we needed you. Now I can be there for you. I consider it a privilege, not a burden." "We,ve worked it out Mom. I,m going to do A, Michael will do B, the kids will do C, and Bob and Louise are coming to stay for a few days the first of next month to give us a little break. We,re all happy to work together to help you in your time of need. You were always there for us." "Don,t worry Dad. If it gets to be a little too much for us we can always get an aide to help, but right now we don,t think that will be necessary. We want to do it ourselves. It,s a privilege, not a burden."

During such a discussion it is also wise to discuss certain parameters, certain limits on what can and what cannot be done for them. Like certain hours in the week when the caregiver cannot be available for other reasons or certain services that cannot be considered for financial reasons.

During such discussions, be prepared for the patient to raise the question of physician assisted suicide for the desire not to be a burden physically or financially is one of the most common concerns leading patients to consider ending their life. If the patient mentions suicide, listen closely for a discussion of the patient,s reasoning, for it may give clues to other concerns of the patient over and above the question of burdens or worthiness.

E. Family Desertion

Families must constantly remind themselves that patients are likely to be much more concerned about how they will die than about what it will be like to be dead. A major fear of many terminally ill patients is that they will die alone, deserted by family and friends. Failure to address this fear when it exists leaves the patient in a precarious position. Afraid that complaining will be seen as being an ungrateful patient and drive their family away, they fail to complain about symptoms that should be relayed to health professionals for evaluation and therapy. Afraid they will be too demanding, they bear discomfort which can often be ameliorated by simple turning or by use of a bedpan. Afraid any previous love shown was only there for what the family could get in return and not out of true love, they strive to find new ways to continue to give to family members as a means of "buying" reassurance they will not be deserted. Afraid that it is not in the nature of their family to cope with someone who is ill, they fear and fight short-term hospitalization or placement in a nursing home out of fear no one will ever come to take them home.

Unfortunately, at times physicians are aware these fears are justified, making reassurances to the patient difficult. At other times, patients are so overly demanding, even truly caring family members believe the patients should do more for themselves. And at times, the truth is the patient was not there or was unable to be there for the family in the past making the family justifiably resistant to giving as much as is requested --not feeling that giving back is a privilege.

Some patients have been overly controlling in their family relationships and fear revenge will play a major part in how they will be cared for in their final days, a feeling which may or may not be justified. Some families realistically lack appropriate caregivers, or members who are available, or those who care enough about the patient to make the often extensive efforts required to aid in the process of terminal care.

In dealing with patients who express or suggest anxiety about family desertion it is important for the potential health care team -- family, friends and health care providers -- to come up with an overall plan to present to the patient instead of doing it piecemeal. Frequently, discussion with the patient will allow a determination of when the patient feels comfortable caring for himself or herself in the absence of active care by others or to a realization and acceptance by the patient the time has come to arrange for a paid aide to cover periods when family and friends are not available or need respite relief. In contrast, if the patient doesn,t know what to expect, he or she is likely to consider any failure of the family to do what the patient desires to be an early sign of desertion.

In addition, while developing a strategy for home care, it is important to define when hospitalization, nursing home care, or hospice care may become a more desirable option. This is best done in consultation with physicians and, when finalized, conveyed to the patient so if and when the future hospitalization or admission to a nursing home materializes, it will not be taken by the patient as a sign of abandonment.

In developing a plan, honesty is essential. A person who must run from the site of blood may be limited in the roles he or she can undertake in the scheme of care, but certainly should still take part in the overall plan. A person with lots of family commitments or who lives at a distance may not be as active an everyday participant, but can make the most of visits if they are planned ahead of time and are accompanied by a bright appearance. On occasions, such infrequent visitors should be given the task of asking directed questions, for they are often better positioned to ask about the patient,s concerns than those who are direct caregivers, for they may not be as threatening to the patient who is worried about family desertion.

F. Abandonment by Physicians

Just as terminally ill patients fear family desertion, they also fear abandonment by "their doctor." Limiting this fear is likely to require not only the loyalty of the physician, but understanding on the part of the patient and family as to some of the realities of medical care.

First, physicians practice medicine as an occupation. Because present reimbursement policies frequently deny payment to two physicians of similar sub-specialties at the same time and because most terminally ill patients are being followed by a true specialist as well as a primary physician, the primary physician is often in a position in which he or she cannot bill for time spent with the patient.

Second, physicians often become the patient,s "closest friend" at the end of life -- the person with whom they share their innermost concerns. In a way this is to be encouraged, for the physicians is often best situated to lead the health care team and develop strategies to meet the patient,s needs, but it also places a major emotional burden on physicians who may be following many dying patients at the same time and who are repeatedly forced to suffer with "close friends" far in excess of others in society. For their own protection, especially at times when they are hurting emotionally for other reasons, physicians are likely to purposely avoid repeated serious conversation of emotional problems with certain patients. During these periods, they are likely to concentrate instead on strictly mechanical problems, such as changing drug dosages or the contents of fluids to be administered to the patient.

Third, specialists who care medically for terminally ill patients under present health care systems frequently lack the knowledge of the patient,s personality and the existing family structure required to deal with their existential problems. In such situations, physicians are likely to resent -- and therefore avoid -- being asked to deal with existential problems which can be handled just as well or better by family members. When this happens, the family may feel annoyed, but any annoyance toward the doctor for not undertaking a suggested action or not offering to intercede in dealing with an existential problem should not be communicated to the patient in order to avoid the misperception that the physician is in fact abandoning the patient. Such non-medical problems should be handled by caregivers other than the physician, as others are at least as well positioned to know and deal with these issues as is the physician(s).

Fourth, at times, physician will want to talk privately with the patient or with only a single, trusted family member being present. If the conversation is with the patient alone, it occurs within the patient/physician zone of privacy, meaning the physician may not be able to further discuss this conversation with the family even if he or she would want to do so unless the patient specifically agrees to such a further conversation with the family. If there is only one family member present, it generally becomes his or her duty to discuss what was said with other family members, although such further conversations may be limited by the patient,s expressed wishes during the initial conversation.

Fifth, at times physicians will want to talk separately with family members without knowledge of the patient, but this should be limited, for subsequent awareness of such discussions is likely to threaten the patient,s confidence in the patient-physician relationship. [Such meetings are likely to suggest either a breach of confidentiality or a conspiracy to the patient.]

Sixth, there are many parts of patient care which only a physician can or should handle, like ordering tests, interpreting test results, developing a diagnostic or therapeutic approach to a problem, discussing and arranging the undertaking of a new therapeutic approach, and keeping the family aware of what is happening with the patient. Because these tasks fall almost exclusively on physicians, they have a tendency to look on these aspects of care as their responsibility, while expecting other caregivers to handle those aspects which can be handled by more than one member of the health care team. An important aspect of this split in responsibilities involves physician/family communications. The physician,s role requires him or her to explain to the patient and/or family what is happening and what therapeutic plan is suggested, but this requirement is only for one telling -- not to each family member individually.

An important method to deal with the last three issues is for the patient and family to agree upon a representative to act as spokesman for the family to receive communications from providers on one side and concerned family and friends on the other. Concerns of family and friends can thus be limited and prioritized for discussion with health care providers and the providers, information can be limited to a single discussion, saving time and limiting the chances for none agreement over what was said.

Obviously, there are times when the physicians is likely to want to talk to various family members or to all at once, but when time is limited and decisions relatively unimportant, limiting the discussion to a single spokesperson leads to efficiency, making the interaction much more pleasant for the physician. [Remember, physicians are human. They are more likely to choose to spend more time in pleasant interactions than in situations which are likely to prove unpleasant or confrontational.]

[Note: The author remembers his first chief resident during his internship explaining how he forces a large family to choose a representative for him to speak to. "I just go out of the intensive care unit, face all the people sitting around in the waiting room, and ask for the family member responsible for the patient,s bill to step up to speak with me." There should be a better method of choice, but I do think the choice of a representative is important, especially when dealing with the multiple issues which are likely to be involved when dealing with a prolonged term terminal illness. Witness the movement toward suggesting that patient appoint health care agents.]

 

 

 

G. Loss of Standing or Status Within One,s Profession, Family, and/or Community

Terminal patients fear the loss of relevance in the world. Even though they are troubled by their own problems, family and friends should continue to seek out the patient,s advice about issues with which they have traditionally been involved in the past. Being asked for advice supports the patient,s belief they are still relevant to the family and is not likely to be considered a burden, just as asking them to do things within their continued ability is likely to improve relationships, not make them worse.

As part of maintaining this self-worth, terminally ill patients should be encouraged to continue their work and their relations with family and community to the extent desired as long as the patient expresses a desire to do so. Although this may require greater effort than taking over previous duties of the patient at work, maintaining the patient,s involvement is likely to help avoid the existential suffering associated with faltering abilities. At the same time, enabling the patient,s continued involvement with family and community will help reduce existential suffering by maintaining the patient,s self-worth and feelings of self-control in life.

In addition, family efforts to help maintain the patient,s status in family and society is likely to be seen by the patient as a sign of appreciation of the patient,s previously established role, thus fortifying positive feelings about the patient,s achievements in these fields during earlier stages of life.

H. Losing Mental Ability

Many people are extremely fearful of losing their own mental ability. One cannot be totally reassuring this will not happen, because depressed mental function is almost the norm at the very end of life. Nevertheless, it is fair to say that most patients with cancer, for instance, only lose mental function during the very last few days of life unless they have tumor in the brain itself. This is also true of most other terminal illnesses, except those which are primarily diseases of the brain, such as strokes, encephalitis, multiple sclerosis or the progressive dementias, like Alzheimer,s disease.

To the extent that patients fear loss of control over their own medical care at the end of life, advance medical directives can be reassuring and effective if properly explained and written, especially when the cause of the terminal disease and its likely clinical course are already known. Use of specific advance directives in these situations is terribly underutilized because it does not conform to those legal documents which appear on typical forms advocated by the states -- but they are just as legal as the so-called "statutory forms." [See chapter on advance directives later in this book]

Because patients frequently equate taking increased amounts of pain medications with loss of control, they may refuse to take appropriate doses of narcotics. Patients should be reassured the same process of developing tolerance which leads to their needing larger doses to control pain also effects their mental tolerance for pain medication. Upward adjustment of doses for pain relief should therefore have no more effect on their mental function than the lower dose did previously.

I. Narcotic Addiction

The author remembers vividly talking with fellow interns in the early nineteen sixties about the use of narcotics in dying patients. At the end of our discussion, we would all agree in a rather flippant manner that all cancer patients should die addicted. Thirty-five years later, the terms have changed but the concept remains valid. Today we recognize the difference between tolerance and addiction and realize when narcotics are given for relief of physical pain, addiction almost never results. Tolerance, yes, but not addiction.

Thus, today we would still treat the patient as we advocated then, but would view it differently. We would say there is no reason not to give as much narcotic as necessary to overcome both the tolerance and the pain because any stigma which attaches to the word "addiction" has no place in the reality of death and dying. It is just an unfortunate coincidence the same family of drugs used by terminally ill patients to relieve physical pain are also used by people with addictive personalities to blunt their psychic problems leading to narcotic addiction. If it wasn,t for this coincidence, patients would not fear "addiction" to pain medication any more than they fear addiction to medication to relieve diarrhea. In fact, paregoric, another member of the same family of opioid drugs and occasionally addictive in itself, has been used for a century to treat diarrhea without producing any general fear of addiction.

No terminally ill patient should think less of themselves because life has burdened them with a painful disease requiring relief from narcotics, but that is much easier to say than it is to accomplish. If nothing else, reading this book may produce an equally important goal -- to convince the family not to fear addiction -- for it is frequently the family and non-physician health care providers who subconsciously fight the use of adequate narcotics to control pain in the terminally ill because of their notoriety related to addiction.

J. Loss of Dignity During the Process of Dying

One cannot assure a terminally ill patient they will not have any loss of dignity during in the end stages of their disease, but it is possible to show the patient that as a present caregiver you are concerned about dignity by arranging for personal privacy and hygiene, respecting requests intended to preserve dignity, and by indicating an awareness that loss of dignity is likely to be a concern of the patient in the future.

In general, a patient,s dignity is preserved by continuing to work when possible, by remaining part of the community, by taking pride in grooming, by taking part in conversations, by continuing to help others, and by remaining as much the person they were before they were ill as possible.

By continuing to treat the patient with dignity, being graceful when illness temporarily intrudes on their dignity, and promising to continue to treat the patient with dignity to the end, caregivers also reassure the patient that future lapses in dignity will be accepted without reflection on the bigger picture of who they were throughout a lifetime.

K. Being, Or Being Considered, A Worthless Individual

Fear of being considered a worthless individual is very similar to loss of dignity, but actual fear of being worthless is different. In a highly materialistic world, a patient is likely to think of his or her worth in terms of wealth or the ability to accumulate wealth. A terminal patient is therefore likely to feel worthless if there are few assets to pass on to children -- but this author at least believes the worth of a person,s life is better evaluated based on sayings we find on mugs, or wall hangings, or a greeting card, or in book passages that talk about "success."

From a coffee mug:

"That Man is a Success who strives quietly to make his corner of the world a little better. That man is a success who brings out the best in others and gives the best of himself."

Also consider the beautiful thoughts of the following excerpt, which may serve well to reassure a loved one of the value of their life:

AUTHENTIC SUCCESS

From Simple Abundance, by Sarah Ban Breathnach (Warner Books NY, NY 1995)

Authentic success is having time enough to pursue personal pursuits that bring you pleasure, time enough to make the loving gestures for your family you long to do, time enough to care for your home, tend your garden, nurture your soul. Authentic success is never having to tell yourself or those you love, "maybe next year." Authentic success is knowing that if today were your last day on earth, you could leave without regret. Authentic success is feeling focused and serene when you work, not fragmented. It,s knowing that you,ve done the best that you possibly can, no matter what circumstances you faced; it,s knowing in your soul that the best you can do is all you can do, and that the best you can do is always enough.

Authentic success is accepting your limitations, making peace with your past, and reveling in your passions so that your future may unfold according to a Divine Plan. It,s discovering and calling forth your gifts and offering them to the world to help heal its ravaged heart. It,s making a difference in other lives and believing that if you can do that for just one person each day, through a smile, a shared laugh, a caress, a kind word, or a helping hand, blessed are you among people.

Authentic success is not just money in the bank but a contented heart and peace of mind. It,s earning what you feel you deserve for the work you do and knowing that you,re worth it. Authentic success is paying your bills with ease, taking care of all your needs and the needs of those you love, indulging some wants, and having enough left over to save and share. Authentic success is not about accumulating but letting go, because all you have is all you truly need. Authentic success is feeling good about who you are, appreciating where you,ve been, celebrating your achievements, and honoring the distance you,ve already come. Authentic success is reaching the point where being is as important as doing. It,s the steady pursuit of a dream. It,s realizing that no matter how much time it takes for a dream to come true in the physical world, no day is ever wasted. It,s valuing inner, as well as outer, labor, both your own and others. It,s elevating labor to a craft and craft to an art by bestowing love on every task you undertake.

Authentic success is knowing how simply abundant your life is exactly as it is today. Authentic success is being so grateful for the many blessings bestowed on you and yours that you can share your portion with others.

Authentic success is living each day with a heart overflowing.

Authentic success is to have written on your epitaph, as was written on a gravestone back in 1820: "The only pain she ever caused was when she left us."

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When patients begin to express thoughts of their own worthlessness, find similar passages which fit their life history to read aloud together in order to fortify an image of success in life as being something other than monetary status.

One additional thought when dealing with a patient who suggests he or she is worthless. Consider the possibility that they are thinking they owe it to their family to die. Be ready to reassure them they should not question the expending of their money on their own behalf and that those who would inherit the money would feel bad if everything possible was not done to preserve and insure any meaningful life they might have. Alternatively, if this feeling is based on perceived failures of their own, it may be helpful to introduce the concept of forgiveness and to give permission for self forgiveness.

7.05 Other Causes of Existential Suffering

A. Inability to Obtain, Evaluate and Use Information

Different patients desire different information, and in an age of communication there is almost no limit on how much can be made available to them even at home -- through television, the Internet, or from rental libraries in the form of videos as well as books. Arranging these services may require some effort on the part of caregivers, but is worthwhile not only for the information it provides, but also to help the patient retain his or her personhood. Realistically, at some point the patient will reach the stage when they can no longer partake of the information directly themselves, but even then it is important to try to supply requested information through caregiver intermediaries.

Of course, obtaining the information is only part of the process. The patient is also likely to need and greatly appreciate someone to discuss it with, and someone who takes the responsibility to transmit the patient,s thoughts to other parties directly or through written communication. Offers to do these types of things for the patient and a plan which includes caregivers willing to do such things on a routine basis can be highly beneficial in reducing existential suffering.

B. Loss of Ability to Control One,s Bodily Functions/Loss of Dignity

There is an old truism in medicine -- physicians cannot stand to deal with stool, but have no trouble dealing with sputum (fluid coughed up from the lungs). By contrast, nurses have a great deal of difficulty with sputum, but are not bothered by stool. Why do we mention this? To point out that people differ when it comes to which duties are difficult and which are not. Much discomfort is caused by a patient having to rely on others to move them, feed them, wash them, fetch things for them, and to take care of body excretions when they can no longer be controlled by the patient.

As part of the plan of care for a terminally ill patient, it is important to determine which of these various tasks should be undertaken by which potential participant -- one who does not find the specific act required objectionable. If the person undertaking the task does not find it objectionable, the patient is much less likely to feel it to be a burden. In many relationships, it is correct and appropriate to say: "you did it for me, now I will do it for you." How better to show love?

 

 

 

C. Loss of Ability to Maintain Access to One,s Family or Society

At some point in the course of most terminal disease the patient loses the ability to personally arrange and maintain access to his or her family and society. For a period, help from family and friends in the form of provided transportation is likely to delay this process, but eventually the patient must rely on family and society to make the effort to come to him or her instead of the reverse. At this point it is often the patient who must reach out to appreciate the difficulties experienced by others when coming to see a terminally ill patient in their home.

Some friends and relatives will not appear at the bedside either because of an inability to make arrangements or a personal choice against doing so. For many this will represent a simple desire to remember a loved one when they were happier or more vibrant, while for others it might just be too painful to endure, as it is likely to create recall of painful past memories best forgotten. The desire to avoid visiting a former patient may be particularly strong among physicians, who are likely to fear the creation of their own feeling of guilt, which would make it more difficult to continue a life devoted to helping others.

Whatever the case, the patient is wise not to complain about the absence of any visitor in the past, for there is nothing which prevents a revisit as much as hearing a complaint that a previous absence has been interpreted by the patient as an abandonment. True family and friends tend to visit as much as their schedules and personhood allows. The patient,s best means of insuring this access if it is important to them is to make each visit as pleasant and comfortable for the visitor as possible.

D. Loss of Ability to Control People Formerly Controlled by the Patient

Many people are naturally so controlling of their lives and people around them they have seemingly lost the ability to relinquish their control even when they are dying. When such individuals continue to try to maintain control at a time when they are no longer capable of doing so, conflict is likely to be the result.

Many emotions are involved. The family is likely to desire that everything possible be done, which often requires them to try to vest control from the patient. The patient, seeking to maintain self-sufficiency, is likely to be angered when his or her desires are seemingly undermined by the family. The physician may find it easier to work through the family than the patient, but is likely to recognize that doing so undermines the patient,s self-esteem, maintenance of which is likely to be far more important than having specific directives of the physician followed to the letter. It can be a baffling problem in which communication between family and health care provider is pivotal, setting on goals critical, and separating of fact from fiction essential.

Take, for instance, the value of nutrition. The family is likely to be upset the patient isn,t eating enough. The patient finds eating more than desired to be uncomfortable. The family thinks the patient is failing to take adequate care and wants to intervene. The patient considers efforts on the part of the family to force additional food to constitute loss of control over his or her life. What should be done?

Another example. The patient is given a bottle of pills to take for nausea with instructions to take four a day, but he often forgets. As a result, the patient commonly complains of an upset stomach, yet doesn,t want to give the control of pill taking over to the family. The family gets tired of hearing the complaints about the stomach. What should be done?

In both of these and in similar situations, the author would suggest that whether caregiver intervention is appropriate can only be determined by knowing the seriousness of a failure to follow physician directives, and it is frequently only the physician who can make that determination. Before taking away a patient,s autonomy or self-control, it should be determined that failure to do so is likely to cause significant harm to the patient. Otherwise, it is wisest to leave the patient in control.

If the decision is made to "take control," it then becomes important for the family and physician to sit down with the patient and make it clear his or her care from here on in must be a combined effort, one in which the patient,s duties in the overall scheme will be to accept that others are required to maintain adequate care during the terminal stages of the disease.

To summarize. Patient,s often try to remain independent as long as possible even when their capability to do so is limited. Because the right and ability to control one,s own life is so important in maintaining self-esteem, removing this right adds significantly to existential suffering. Therefore, it is important not to intervene unless and until there is firm evidence intervention is required to prevent significant physical harm to the patient.

During this process it is well to remember the desire to maintain control may well be based on concerns which reach beyond the simple desire to do for one,s self. For many, allowing others to do for them interfere,s with their dignity, while for still others it represents loss of control. For others, simply admitting they have cancer may risk in their minds being stigmatized as a "cancer sufferer," with a resultant change in personal relationships even amongst long-standing acquaintances. Going one step further and giving up control only adds to their suffering.

To allay these fears, it is important to reassure the patient they will continue to make most decisions for themselves and they will certainly be consulted on all. That intervention will only be undertaken in specific situations, such as with the particular problem at hand. Similarly, as discussed further below, it is important to allow the patient the right to choose when to inform others in society about their illness, for this, too, is likely to threaten the patient who wants to continue life as before with a loss of control.

Remember also that with loss of control comes an additional fear, revenge. Although unspoken, many dying patients who question their own relationships with family fear revenge -- that the spouse, child or other relative they controlled or neglected during life will use this time of helplessness to "get even." And, at times it would appear the fear is justified. When revenge is intentional, little can be done, but when the appearance is inadvertent, simple awareness of this potential problem is likely to suggest methods of reassuring the terminally ill there is no ill will intended when caregivers are unable to fulfill the patient,s wishes. There are no grudges for past acts which would lead one to want to get even. To the contrary, there is only appreciation for what has been done in the past, but circumstances are such there are realistic limits on what can be done for the patient. Any failure to meet all the patient,s desires stems from reality, not revenge.

E. Hopelessness

Many terminally ill patients find the most difficult emotion to deal with to be hopelessness. This has long been recognized by the medical profession and is undoubtedly the reason why over the centuries leading up to the last few decades, physicians routinely kept knowledge of the terminal nature of a disease from the patient. It may also explain at least in part the reluctance of many physicians to recommend hospice care, for one requirement of hospice is that the physician judge and note in writing that the patient,s life expectancy is less than six months.

The fear of fostering hopelessness may also explain physician reluctance to discuss with patients the advisability of discontinuing aggressive medical care even when the physician knows it will be futile. Knowing it is time to limit future care to comfort related measures does not always justify such a changed approach, for doing requires the obtaining of the patient,s approval, which is likely to enhance the hopelessness of the situation.

How carefully the plans must be made to present the switch in treatment philosophy to the patient without eliminating hope. No wonder so many physicians and families, after discussing and agreeing on the futility of future therapy, still continue to go ahead with therapy even knowing the risks far outweigh any potential physical benefit. [Note: The author considers continuing such care appropriate even if it is futile, as long as it does not present a significant risk to the patient and is not associated with significant suffering.]

Even those patients who come to fully accept they have an untreatable illness which will cause their death find ways to maintain hope. At times this can take the form of hoping to live to see a particular event, to be released from the hospital, to achieve the resolution of a particular problem, or to achieve a less troubled place in the world to come. At other times even the most realistic patients talk about the possibility of finding a cure for their disease, as if they need a glimmer of hope to maintain them through the final days, weeks or months of suffering -- some hope which justifies their need to endure, a spirit which also requires the presence of "a little" denial.

Somewhere in this consideration of truth and hopelessness we must also face another reality. During a terminal illness, patients are often forced to make many decisions about therapy and therapeutic approaches to their conditions. Patients with higher expectation for the future routinely choose more aggressive care than those with lower expectations, and half-truths or outright lies intended to foster hope are also likely to foster a personal choice for more aggressive care. At times this is what the treating team desires and feels justified to have happened. At times it is not, and greater honesty may be required.

7.06 Stressing Past Accomplishments

It has been said that everyone,s life deserves an autobiography. As the terminally ill patient faces the finality of death, it is natural to look back over and catalogue his or her accomplishments and failures in life, financial, occupational, societal, and interpersonal. Invariably, each individual will fall short of what they wished to achieve no matter how successful their life may seem to others. It is hard to predict how each individual will act. Will they feel good about their accomplishments or will they dwell on their perceived failures? How helpful it would be to the family who wish to support the patient through this time of existential suffering to know what the patient is thinking.

A classic way of achieving this goal, commonly referred to as a "life review technique," involves a review of the patient's life in order to place the current illness in a personal context. It is often accomplished by helping the patient recount his or her history as if to facilitate the writing of a book, even if it is only memoirs for the family. The book itself may be unimportant, for the goal of the undertaking the review is in fact not the book but a means to pick up from the patient,s recitation of life those happenings which are viewed as successes and those which are viewed as failures. Based on this input, further conversations can be directed at stressing the positive memories which remind the patient of success and avoiding those memories which call up feelings of failures. In addition, knowing the patient,s deemed failures in life can be of particular help if they are potentially reversible either before or after death. In the former case, efforts should be made to address issues of patient concern in a positive manner. In the latter, it is important to assure the patient the matter will be dealt with after his or her death.

Other ways of obtaining information about the patient,s thinking include asking such questions as "How would you like to be remembered?" and "Looking back, what do you consider to be the most important events in your life?" Of course, the most important part of this exercise is likely to be the second question: "Why do you look at that as being such an important event?"

7.07 Helping Establish Closure

An additional concern for terminal patients is the need to bring closure of existing issues. Frequently, this will require the help of one or more consultants as well as family members chosen to address specific topics with the terminally ill patient. At times it is difficult for caregivers to raise specific issues because it may appear to be self-serving, but doing so early in the course of the disease is likely to avoid significant soul-searching on the part of the patient later in the course of the disease when understanding the issues and making decisions will only be more difficult.

One method of avoiding the problem of appearing to be self-serving is to use one of the many existing lists of suggested issues to be discussed with terminally ill patients, especially if the list is produced by a reputable organization looked on favorably by the patient.

The following list taken largely from the chapter on pre-death planning in the author,s book on Elderlaw and published by West Legal Publishers may serve as a starting point. Naturally, many of the suggested issues for discussion will be known not to be relevant to the particular patient and can be skipped:

I. Estate Planning:

1. Is there a will? Where is it? Who is named the executor or executrix (personal representative)? How recently was it written? Are there any known desired changes? Should it be reviewed? Should the executor be brought in to discuss it or would the patient rather discuss it with someone else? [Note: Because of the rapid changes in estate tax law, any estate with total assets over $650,000 should probably be reviewed if saving taxes is important to the patient. Even if a consultant is not desirable, a will should be reviewed to make sure time has not made certain provisions obsolete, like the sale of a described car and purchase of another.]

2. If there is no will and the patient has the capacity to execute one, should an attorney be brought in to discuss it with the patient? Should the family accountant be consulted?

3. Are there any personal assets which would be better distributed before death to avoid delayed use during probate?

4. Are the presently named beneficiaries on a life insurance policy, IRA, pension remainder, etc. as the patient would want them to read? Are the names on real estate deeds and money accounts as the patient would like? Should a consultant lawyer or accountant be asked about these matters?

5. Are there any assets which the family may not know about or any "hiding" places for documents which may be unknown to the proposed executor.

6. Are the locations of all keys known? Combinations on any vaults, etc.?

7. Is the patient worried about the availability of sufficient finances to cover family needs in the first few months of probate? If so, can something be done to transfer funds in such a way as to make them more readily available to the family until the probate is completed?

8. If the nature of disease is likely to lead to a prolonged period of incapacity, should special durable powers of attorney be executed to cover the pre-death period?

9. Is the patient owed any money by friends, family members, or business acquaintances? Are these debts in writing? If so, where are the promissory notes and how should the debts be handled after death -- should they be forgiven or attempts made to have the debts collected? If collected, would this best be done before death? [Note: if there are large debts involved, it may be wise to check with an appropriate professional to determine how they should be handled to the best tax advantage.]

10. Does the patient have debts the family is not aware of?

11. Might the patient have insurance which is unknown to the family? Mortgage insurance, for instance.

12. If funds are short, consider the possibility of a reverse mortgage or pre-payment of insurance benefits to avoid undue financial pressure on the patient and family.

13. Has the patient made any transfer for assets in the last few years which could be questioned by the IRS after death. If so, what are the particulars. If significant amounts of money are involved, should a proper consultant be contacted for an opinion on how it should be handled?

14. Does the patient have any valuable but difficult to value collections? If so, would the patient want to consider a sale prior to death to maximize value instead of relying on the executor? How can this be arranged?

15. If any normal heir is not covered in an existing will, are they aware and do they understand the reasons? If a normal heir is not going to receive any gifts, does the executor know why? [Note: It is usually not wise to put reasons in the will, but it is good for those probating the will to know the reason.]

16. Are there any potential beneficiaries of the will who may be hard to find? If so, does the patient know anything about their whereabouts?

17. Is the patient concerned about others learning about his or her estate after death? If so, consider the use of a living trust prior to death to minimize the exposure of documents during probate.

18. If there will be significant estate taxes, the patient might want to consider making gifts of up to $10,000 to multiple individuals prior to death. These gifts will not effect estate taxes after death. The patient might also want to consider prepayment of tuition for beneficiaries or beneficiaries' children or making charitable gifts prior to death as a further means of decreasing taxable assets.

II. Planning for Terminal Care:

1. Does the patient have an advance medical directive? A living will? A durable power of attorney for health care?

2. If the patient has an advance directive, suggest it is probably advisable to review it with the attending physician to see if it covers the likely expected events based on the nature of the patient,s disease and to make appropriate additions if required. [Note: If the patient wants to retain control of future care, a new advance directive with far more specificity than previously signed form documents is likely to be required.]

3. If the patient has named an agent under a durable power of attorney for health care, be sure the choice is still the desired choice and that the individual named is still willing and able to fulfill the responsibility. Ongoing talks between the patient and named agent through the period of increasing disability may prove invaluable in assuring the patient his or her wishes will be honored in the end.

4. If the patient does not have an advance directive, suggest the patient either write down or have a family member write down how they want their terminal care to be handled. Have this reviewed with the physician and then structured into either a living will or as an instructive directive in a power of attorney for health care by an attorney.

The most important questions to address are likely to be:

(A) whether the patient wants to be kept alive as long as possible using modern technology or wants to be allowed to die if the disease causes him or her to lose the ability to think and make personal decisions;

(B) whether the patient wants to name a specific person to make decisions for them if and when they lose the ability to make decisions for themselves;

(C) whether the patient wants to be treated at home even if this means less can be done to prolong their life; and

(D) whether the patient would want to be given nutrition and hydration through a feeding tube in order to prolong their life.

5. Would the patient want to be an anatomical donor of body organs if the nature of the disease permits it?

III. Business Issues:

1. Is there a personal business that will become an asset of the estate after death? If so, have arrangements been made to insure it will be managed appropriately during the probate of the estate? Would it be better off sold before death? Would it be wise to arrange for it to be sold immediately after death for tax purposes?

2. If there is a personal business which will require management that has not been planned for, what does the patient want to happen? Who does he or she want to manage the business during probate? Who should be brought in to make appropriate arrangements through a trust or appointment of officers, etc.? Who does the patient want to be the beneficiaries of the business profits during this time? Is this well documented in the will?

IV. Family Issues:

1. Are there any members of the family the patient has not seen for a prolonged period who he or she would want to see before death?

2. Are there any members of the family the patient has not talked to for a prolonged period who he or she would want to talk to before death?

3. Are there any members of the family whose relationship with the patient is troublesome? If so, why is it troublesome and would the patient want it to be different? If they would want it to be different, would the patient mind if the interviewer made some efforts to reconcile the trouble?

V. Personal Issues:

1. Discuss the contents of any safe deposit boxes and determine who will have access after death. Should any documents be removed and given to specific individuals? Should any be removed so as to avoid them becoming part of probate?

2. Discuss the contents of any safe and determine who else has access. To insure contents do not disappear, make copies of all important documents.

3. If the patient has any significant monetary funds which are not in safes or accounts, does the patient feel comfortable they will be appropriately distributed after death? If not, what should be done?

4. Consider the various roles played by the patient in life, such as a trustee in a trust or an officer of an organization. Should resignation occur? Should a successor be named? Should the organization be told of the patient,s state of health? Does the patient want to make a last appearance or write a note to the organization?

5. How does the patient feel about his or her religious affiliations? Is there a desire for communication with the congregation? With any individuals in the congregation? With any priest, minister or rabbi? How could this best be arranged?

VI. Issues Related to After Death Events

1. Does the patient want to be buried or cremated? Where would the patient want to be buried or the ashes placed? Is there any specific desire about a headstone?

2. What religious or other memorial service is desired? Is there anyone in particular the patient would like to have speak at a funeral or memorial service?

3. How would the individual want to be remembered in an obituary, a eulogy, etc.? And, how would the individual prefer those left behind handle the mourning period?

4. Does the patient have any specific thoughts about funeral expenses or organization? Any one person who would be preferred to handle the arrangements?

5. How does the patient feel about an autopsy?

6. Have there been arrangements made for a burial plots, cemetery contract, monument preparation, trust fund to construct burial vault or to maintain the burial site.

7. If the patient,s death will leave behind a spouse, how would the patient feel about a remarriage. Are there any concerns about finances and the children if there should be a remarriage. [Author,s Note: In my experience, most terminally ill patients would want the spouse left behind to find a new mate, but many are concerned a new mate might "take" assets earned by the two together away from the children. Knowing this about a deceased spouse often makes it much easier for the second spouse to date without guilt and also to make certain requests of a future spouse as it relates to financial planning.]

VII. Papers to Accumulate

1. Will

2. Advance medical directives

3. Passport

4. Insurance Contracts

5. Birth Certificate

6. Financial Power of Attorney

7. Anatomical Gift Form

8. Information of Bank Accounts, Investments, Asset Holdings, Etc.

9. Funeral Plans/Burial Arrangements

10. People the Patient would want Notified

11. Specific Requests

7.08 Helping Patient with Unfinished Family Business

A task of great importance to many dying patients is the need to bring closure to family disagreements which may have occurred over the years and never been resolved. This can be a curious phenomena. Within all families there are at least occasional disagreements which are not dealt with immediately but only resolved with time. Resolution may be the result of mutual agreement made when the issue is less heated or may be resolved by unspoken actions which negate the premise on which the original conflict was based. Just as some conflicts are resolved with time, others remain unresolved, either fading into oblivion because they are too unimportant to be remembered, or continually constituting an obstacle to better relations yet being judged to be too controversial for either party to risk addressing for fear of producing even greater animosity between them.

All this can change when time is running out. Many of those disagreements which previously "could wait" cannot wait any longer. The time has come for both parties to decide whether the issue should wait forever, or whether a resolution should be sought in spite of the high risk of pain and further distancing during the terminal disease state. When we think about it, we all know people who have chosen to go to their graves with important unresolved family issues, and, just as importantly, we all know people who live wishing an issue with a now expired person had been resolved prior to his or her death. What we don,t know is whether either would be happier if the issue had been addressed.

As caregivers, one should give great deference to what the patient wants in these situations, unless it is quite clear the healthy party wants to seek resolution and is willing to go more than half way in achieving that result. Even so, it may be difficult to know what the patient wants. Perhaps a question, "Would you like to see so-and-so" or "would you like to talk with so-and-so" would be helpful. Alternatively, maybe so-and-so should be called and asked similar questions. Then the patient can be asked, "would you like to see or speak to so-and-so? I know he or she would like to see or hear from you."

Another way of trying to find out what is on the patient,s mind is to ask them to list what they would do if they had ten years to live; five years; one year; three months; or less. Alternatively, one can ask more directly if the patient feels he or she has any unfilled obligations to family or friends they want to deal with? Conversations they would like to have? Messages they would wish to convey? Objects, feelings, or thoughts to share with others before they die? Personal desires from the past they would like to fulfill? A debt to repay? A writing or recording to leave for posterity? Information about one,s own religious or moral beliefs to be shared with others?

One may also try to learn what concerns the patient by asking specific questions related to personal desires surrounding death. How do you want people to treat you when you are close to death? Is there anything you would specifically want done? That you would not want done? Are their any religious practices you would want observed? Is there anything which is normally done which you do not want? Is there anything you would specifically want done for people you love?

7.09 Being There

First and foremost, families should maintain presence with the patient even when there is little specific which needs to be done. This allows the patient to initiate conversation when desired and avoid the fear of abandonment -- probably the most pervasive worry of most terminally ill patients once the fear of terminal pain has been removed. In this situation, "presence" need not be continual, but may involve no more than looking in on a patient at frequent known intervals. Just knowing someone will be coming to answer questions and deal with complaints if necessary is the essential value of presence. One of the most difficult problems in dealing with the dying patient is the need to reassure the patient that as a caregiver you are not becoming resentful of the time required to meet the patient,s needs. This may be made much easier when presence is not continuous, but intermittent.

Remember also the presence of complaints does not necessarily indicate something need be done in the absence of a direct request of the patient to do so. In many cases, the complaint is just being registered to be heard and not with the expectation something can be done. More important than doing things is listening to hear what is really bothering the patient, to give little bits of support, to listen without judging, and to give him or her a chance to work through the problems which must be faced during the dying process.

7.10 On Showing Compassion

Webster's dictionary defines compassion as a "deep feeling for and understanding of misery or suffering and the concomitant desire to promote its alleviation." In many ways, it is more important to express compassion than to actually achieve relief of suffering for the terminally ill patient, for this goal may be unobtainable, while the expression of compassion is always possible. Compassion requires a bond between individuals that cannot be conveyed by the offer of a technological fix for terminal illness. Instead, promising a fix when none is obtainable only suggests a desire to avoid dealing with the patient,s suffering, a sign of abandonment.

Compassion is a virtue which involves assuming the burden of another's suffering as one's own. Compassion thus requires that caregivers suffer with patients rather than express moral or theological judgment. It thus requires presence rather than abandonment, and the recognition and appreciation of the particular nature of suffering, especially existential suffering.

Each individual will make of suffering what he or she will make of it. To show compassion requires acceptance of this individual nature of suffering. Making statements like "I know how you feel," is not only inaccurate but demeaning to the individual. Such words only isolate the suffering individual by suggesting the listener has the power to understand the patient,s most private thoughts without even hearing them expressed. This leaves the patient powerless, with no reason to even attempt to put his or her individual thoughts into words and thus robbing the listener of an understanding of the problems which need to be faced. To avoid this from happening, the compassionate individual must accept a position of relative weakness by acknowledging the difficulties facing the patient while continuing to express an interest. Obtaining a better understanding of the particulars will enable the caregiver to be in a better position to help.

 

 

 

7.11 Choosing Appropriate Caregivers to Question the Patient

When dealing with a patient,s existential suffering, the first step is often to create an atmosphere in which the patient is willing to discuss his or her concerns. Health care providers and family members may convey either implicitly or explicitly that they are uncomfortable discussing such issues. If one feels uncomfortable and is not adept at hiding the discomfort, it is wise not to address the issues in the absence of someone trained to deal with resultant answers, such as a competent social worker, pastoral or grief counselor, or clergyman. The designation of the appropriate person to do so may in fact bring about the recognition of similar fears held by family members which should also be addressed.

7.12 Working Through Problems/The Physician,s Role

While the family must usually carry the major burden in dealing with a patient,s existential distress, the physician generally carries the major role in preventing intrusion on this ongoing interplay by insuring other symptoms are well controlled. When other symptoms are poorly controlled, efforts to deal with existential problems are constantly interrupted with the reality of pain and distress sapping the patient,s time and strength and making it unavailable for efforts to express gratitude, forgiveness, promise, peace, or hope between patient and family.

7.13 Specific Suggestions

A. Maintaining Appearance

Patient,s concerns for their own physical integrity can be helped by efforts to improve their own appearance in their own minds. One method of helping is therefore to enhance the patient's appearance by attention to grooming, purchase of new clothes, alteration of clothing for appropriate fit, and use of cosmetic prostheses when appropriate.

B. Helping Maintain Function

Attention should be addressed to maintaining patient function even when its maintenance may be more difficult than performing the function for him or her. This may require

purchase of devices, such as hearing aids or artificial limbs, the reason for undertaking the expense being more for maintaining the patient,s integrity than the ability to function.

C. Adding Meaningfullness to Life

Meaninglessness of life is a major component of existential suffering, especially in people with high achievement levels in the past. An important approach to this issue requires the identification of short-term achievable goals whose fulfillment could preserve a sense of self worth even if the benefits of fulfilling the goal may be minimal. Meeting with a religious counselor may also be very effective in providing short term spiritual goals which may be accomplished even in the presence of severe physical incapacity.

Some methods of adding meaningfullness may be the taking up of a handicraft the patient was always too busy to undertake in the past. Another can be as simple as learning to scan the Internet for information of particular interest to the patient.

D. Stressing Pleasure

Throughout life, we constantly balance risks and pleasures. We limit the pleasure of foods in the newborn in the hope of avoiding allergies in the future. We accept the side effects of medications in the hope they will prolong our lives. We give up the pleasure of smoking for the same reason and undertake serious studies in the hope the knowledge obtained will make life more fulfilling in the future.

But when a patient is terminally ill, all this changes. There are no long term risks and even the short term risks are likely to be dominated by the fact that most of remaining life is likely to be very limited in pleasure. This dramatically changes the balances we normally make over a lifetime.

If the patient wants to do something that will give him or her pleasure it is probably warranted even if it risks an earlier death. For example, consider a terminally ill patient who wants to go on a cruise or visit a specific place where medical care is likely to be highly limited. Do it. The worst that can happen is that the patient will get sicker and die, but they are about to die anyway. And sudden death is likely to be considered better by the patient than living through the end-stages of the terminal illness.

Similarly, don,t worry about narcotic addiction (tolerance). If full relief of pain makes life more pleasurable, support it. We do not have to worry about the risk of addiction in the future. And for heaven sakes, it the patient still wants to smoke or wants to take it up again, encourage them to do so if they find it pleasurable. [I know there will be arguments about this statement.]

And keep in mind the fact the patient has little time to give to non-pleasurable efforts. Time spent getting to, in, and returning from a doctor,s office or a hospital to obtain chemotherapy and then living through any period of ill-effects thereafter is dear to the patient. In many, using that time to enjoy life as best they can better serves the patient than spending time in pursuit of a few more weeks of life.

Similarly, undertaking therapeutic regimens which interfere with active use of time in pursuit of pleasure is likely to be contraindicated. Medications which produce depression or sleepiness should be avoided. Procedures with require time in a hospital should be limited as narrowly as possible, unless the patient happens to be one who enjoys being there as a setting for social interaction.

E. Honoring Privacy

Largely as a result of advancing technology, cancer is being diagnosed much earlier than it has been in the past. This has allowed some improvement in the cure rate, but has also produced many more patients who suffer a "terminal illness" for many months and years before physical deterioration becomes evident. During this interim period, between the original diagnosis and the onset of generalized physical deterioration, patients are likely to react very differently with regard to discussing their disease with family, friends and acquaintances.

Some patients may choose to bring up and discuss their illness with almost everyone. A casual observer might suggest the patient is looking for sympathy -- "woe is me" -- but this may be unfair, for it is likely the patient is just using these conversations as a way to work through the various stages of coping with death by seeking methods of accepting their life is ending.

Other patients may also be comfortable discussing their illness with others if the issue is raised by the friend or family member in a way which suggests a desire to understand the patient,s thoughts either as a caregiver or just for their own interest. Sharing one,s thoughts in an almost random fashion may make it easier for caregivers to know what the patient desires without the need for a direct request or may just indicate the patient wishes to share experiences as a lesson for others who are certain to face similar experiences in the future.

In contrast, however, many patients express a strong desire to keep any knowledge of their condition personal. They fear the stigma of being a cancer victim and want to avoid any change in their relationship with the world for as long as possible. Eventually, physical effects of the disease or of concomitant chemotherapy will become so evident the truth will have to come out, but until that happens, they do not want to be denied the chance to work, communicate, and enjoy life as they have in the past by well-meaning, but intrusive outsiders.

At times it is difficult for those in attendance to deal with the approach chosen by the patient, but we must remember each person deals with the acceptance of death in their own way. The same information or incident may be described repeatedly to sequential visitors until we are tired of hearing it, but the patient who is seeking varied responses in the hope of finding a means to deal with his or her problem in an acceptable way should be encouraged to do so. Alternatively, the patient who is repeating the story simply out of the desire to continue to be a helpful person in society by sharing an experience others have never known should similarly be commended for their effort, not criticized.

Conversely, as caregivers we must respect the patient who has chosen not to routinely reveal or discuss his or her illness for personal reasons even though it may make it more difficult to fulfill our own roles. At times, when the requirement for caregiving makes other routine chores or habits of the caregiver impossible, it may become necessary to reveal facts which we have been asked to keep secret, but this should only be done out of need and with a request that the information not be passed beyond the person who "has to know."


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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