Dying patients usually have all the emotional problems they have always had. The image of death growing up in front of them does not obliterate everything that went before. Money problems have not evaporated. Family concerns persist. And, of course, all of the neuroses that were there before are still there. If someone was depressed and anxious before entering the hospital for the last time, that experience has made these symptoms worse. The fact of impending death throws these other problems into the shadows, but they erupt from time to time; and in the very end they are what trouble the dying patient most. Even throughout a prolonged period of approaching death, though, there are therapeutic interventions that can lessen that person’s distress and suffering. They are the ordinary, but critical, interactions that still go on as they have always gone on throughout that person’s life.
Everyone with whom the dying patient comes in contact is cast in the role of therapist. These persons include nurses, hospital attendants, doctors, visitors and others who pass by regularly. Each one of them has the potential to make the patient feel either somewhat better or somewhat worse. In order to be truly helpful, however, these therapists, whoever they are, must know the patient, must know about his/her illness, and must know themselves. Also they should know life well enough not to be themselves afraid of death.
Character is the principal determinant of the way someone lives and ultimately dies. Behavior during the time of dying grows naturally out of everything that has gone before. At the end of life, those who are dying are still the same person they have always been. Therefore the same things matter to them. For that reason they should be allowed to engage in their usual pursuits,
within the limits of their physical strength. They should work a little, if they can; and if they want to and are able to, they should continue their jobs. Certainly they should read if they want to, even into the small hours of the night. In short, they can use their energies-- even dissipate their energies-- just as they choose.
Their particular needs must be met, not their needs as someone else would expect them to be, but as they really are—as the patient expresses them. Since many people find religion comforting, they should have the opportunity for pastoral counseling and for prayer. If they do not want to avail themselves of that opportunity, they should be left alone.
The patient’s concerns must be addressed, and these too may not be what someone would anticipate. The typical patient is likely, of course, to worry about how painful or uncomfortable the last days of life will be. Probably these patients will worry also about their families and about their future. They may even worry about their families worrying about them. In addition to these realistic and perhaps inevitable concerns, some patients have fears that are really outgrowths of neurotic conflict. Death may suggest something special to them, the fantasy, perhaps, of lying helpless under the ground, or the related fantasy of physical dismemberment or dissolution. Usually some device can be found to reassure such individuals, even though there is no time to analyze their underlying emotional conflicts.
Often the fear of death that some patients express is recognized on close examination to be a different fear altogether, such as the fear of separation and loneliness, the fear of loss of
control, or the fear of pain, disfigurement, or failure. These patients, too, can be reassured by addressing their real fears. For example, they should know that they will not be abandoned. No matter how sick they become, someone will be there to take care of them. And they should be led to understand that however severe their pain becomes, they will be given, promptly, enough medication to relieve it. Also they should be assured that however sick they may become, attention will be given to their physical appearance, so that they always look presentable. Finally someone must find time to speak with them about their lives so that the fact that they
have not accomplished everything that they set out to do when they were growing up is not construed by them as a failure.
Dying patients must be cared for even if they cannot be cured, and their treatment varies, depending upon their illness. Some conditions are more painful than others. Some are
more enervating or more incapacitating. Some affect the special senses, such as sight or hearing, and consequently cause particular distress. Each illness represents a special problem in
management which must be solved in order that the patient not be distracted from the remainder of life by constant physical suffering. If it has become plain that he/she will die from this last illness, the goal of medical management should be to make him/her as comfortable as possible for as long as possible. Heroic attempts to delay the final moment of death should be avoided, for they are invariably distressing to the patients and their families. They are a mockery of the medical purpose, which is to prolong life, not death. For similar reasons a conscious effort should be made to spare the patient the potentially endless series of medical and laboratory procedures that seem to spring readily to the medical mind and that, if allowed to intrude into each day, can prevent anyone, however wise and mature, from dying in peace.
Seriously ill persons should be informed about their condition, at least to the extent that they wish to be informed, and the dying patient is no exception. In this connection the question is usually raised about whether or not someone should be told that he/she is going to die. The answer, of course, depends on what that person wants to know. Many patients reveal in their questions, or in their lack of questions, that they do not want to contemplate the possibility of dying. No purpose is served then by denying them that escape. Consequently no unhappy information should be volunteered to them, although, again, whatever questions they ask should be answered. When patients really want to know about their condition, then surely they should be told—not how much longer they have to live, for that period of time is never predictable.
but rather the likely course that their illness will take. Even bad news is a relief sometimes from the anguish of uncertainty.
The fact is, however, that most patients who are so desperately ill know well enough that they are dying. What each person needs to know, and be reminded of, is that there is hope, as indeed there is always hope; and that in any case he/she will be cared for and attended to the very end.
The therapist is important to the patient because of who he or she is rather than what he or she says or does: it is the relationship between them that matters. The therapist must be able to tolerate the painful intimacy that dying patients share in even their brief encounters. These therapists who act in the face of death must be compassionate and understanding, and steadfast. It is important that they themselves have made peace with death, the death of those close to them and their own death yet to come. And they must have found meaning in life.
This is an idealized portrait of a therapist, to which we all strive even if at such terrible moments we fall short.
The Role of the Family
The family must serve as therapist to the dying person, sometimes, unfortunately, as the only therapist, since too often no one else is willing to tend to his or her emotional needs. They must have all the virtues of the therapist and, in addition, courage. The person they are caring for will feel less frightened if at this critical moment they, themselves, are not afraid. But patients should not be plied with false optimism or in some other way treated like a child. Families must be patient. If the dying person becomes irritable or unreasonable, they should not become personally offended. The important task that they can do for him/her better than anyone else is simply to be there. For that reason consideration should be given when possible to removing the dying patient home, where treatment can be continued. Usually patients are more comfortable there and less alone. They can be with those members of their families who will live on after them; and consequently they will in a way see themselves as continuing on. If they finally choose to be by themselves, that wish too is usually easier to satisfy at home than at the hospital.
Of course the family must tend also to themselves. They cannot expend all of their energies indefinitely in the care of one of them who is dying. They should have time off occasionally from sitting with the patient. They should be able to enjoy themselves then without feeling guilty. Certainly they cannot stay away from work or from school for any length of time. Also they should try to be with each other. They will be comforted by sharing their feelings of grief, for death is lonely even to those who survive. Finally they should make proper plans for their future, including their financial future, so that they—and the patient, who is committed to them—can feel secure. (c) Fredric Neuman (excerpted from "Caring...") Follow Dr. Neuman's blog at fredricneumanmd.com/blog also questions at fredricneumanmd.com/blog/ask-dr-neuman's-advice-column/