Reasons for Discontinuation of Treatments for Severely Demented Patients: A Japanese Physician's View
- Atsushi Asai, MD, MBioeth., DMSc., Motoki Onishi, MD, MA.
Department of General Medicine,
Kyoto University School of Medicine, Kyoto University Hospital
Sakyo-ku, Kyoto, 606-8501, Japan
Eubios Journal of Asian and International Bioethics 11 (2001), 141-144.
In the present paper, we evaluate the grounds on which therapeutic approaches are determined in elderly demented patients as a typical group of patients who are conscious but lack the ability to make competent judgments. It is argued that none of the factors that the patient as an individual being has at present and that are complete in that individual - the age of the patient, dementia, personhood, and the ability to feel pain - is likely to be a genuine reason for care-providers including health care workers and patient's family to discontinue the treatment for severely demented patients. It is also claimed that reasons for discontinuation of the treatment for severely demented patients arise from the relationship between the patient and the care-providers, especially the patient's family. The human relationships between the patient and the family may be maintained as long as the latter find some significance in the presence of the severely demented patient and recognize him/her as 'one of them'. When the patient ceases to be 'one of them' for the family and is excluded from 'their company', the reason for supporting the demented member of the family is lost. The benefit to the patient and the value of his/her presence lose the individuality or specificity and are subjected to interpretation by the family. Therefore, the reason for discontinuation of the treatment for a severely demented patient is termination of the relationship between the patient and his/her family. The significance of our conclusion is briefly discussed.
This paper deals with elderly demented patients, who are classified between patients who are completely awake and capable of making decisions and those who are in a coma and are capable of no experience. Elderly demented patients vary widely in the ability of judgment, ability to feel pain, and state of consciousness, which also change in each patient. The activity level, degree of independence, and relationship with the family also differ among patients. It is extremely difficult to evaluate how much medical care, particularly care for prolongation of life, should be given to patients in such diverse and variable states. However, it is important to consider on what grounds these patients are treated, because clarification of reasons for the initiation and discontinuation of treatments will allow sufficient assessment of whether the grounds for the initiation and discontinuation of the treatment are appropriate or not, and what problems there are. The elderly population is increasing, causing major clinical medical problems. Therefore, the state of medical care for elderly demented patients should be evaluated.
In the following discussion, we evaluate the grounds on which therapeutic approaches are determined in elderly demented patients as a typical group of patients who are conscious but lack the ability to make competent judgments. Therefore, this paper is intended primarily to obtain an insight into facts rather than to present normative arguments about how therapeutic approaches should be determined. In this paper, medical care of elderly demented patients is addressed as a bedside problem from the viewpoint of medical doctors, and problems such as the distribution of medical resources and the medical system are not discussed although we are aware of the importance of macro-allocation. For one seldom experiences a situation in which treatment for a particular patient is discontinued in consideration of other patients, future patients, general public, or national finance in one's work as a care-provider, and because situations in which one patient must be sacrificed for the treatment of another are rare in the environment of our medical services, at least in Japan so far. Also, our discussion that follows is focused on judgments by care-providers (medical doctors and patients' families) at the bedside.
Our view discussed in the following has been based on our personal and limited experiences and we have no intension to argue that our experiences are universal. However, although it is rather discouraging, we believe that our outlook deserves to seriously be considered. Rigorous criticism and arguments against our view will be really welcomed.
2. Reasons for not treating
It is extremely important to consider reasons for not treating patients, because care-providers never discontinue the treatment without good reasons. One of the fundamental objectives of medical care is to cure the disease of patients who, for some reason, have appeared or have been brought into the scene of medical care and to keep them healthy as long as possible. Therefore, to treat patients or to continue treating them is the 'default' reaction of care-providers. Even patients with the severest dementia are not exceptions. We assume that there are 'reasons for not treating' if care-providers including physicians do not treat a patient or discontinue the treatment for the patient when the patient is known to have some disorder. Treatment is withheld only when such reasons prevent continuation of treatment as a default.
3. Possible reasons for not treating
Here, we enumerate factors often referred to as reasons for discontinuation of treatment for elderly demented patients and show that they are not true reasons for discontinuation of treatment. We further show that there are reasons of other dimensions for discontinuation of treatment.
Old age: If a 60-year-old patients who are completely bed-ridden due to highly advanced dementia develops pneumonia, whether pneumonia should be treated or not emerges as a major problem. However, is there a reason to withhold treatment if an 86-year-old demented patient who, however, can visit the outpatient clinic alone, contracts pneumonia? If the patient asks for treatment or says, 'Could you do something to stop this cough,' no physician or member of the patient's family would deny treatment, saying, 'You are already 86 years old.'
Reasons for withholding more invasive examinations or treatments may include poor tolerance of the patient, high risk, and no change in the therapeutic approach according to the test results. Then, are there any non-medical, or ethically justifiable, reasons for discouraging examinations? If the examinations are medically indicated and there is a good prospect of their safe execution, age is not related to deliberate determination of medical actions. If the decision of whether a particular examination should be performed or not should be made automatically according to the patient's age, problems such as what is the cutoff line and who determines it would spring immediately. The problem of distribution of medical resources, i.e. the problem of priority between an elderly patient and a younger patient, is naturally another question (1).
Presence of dementia: Can the presence of dementia be a sufficient reason for withholding treatment? For example, is there a good reason for discouraging surgery to a moderately demented patient who complains of difficulty in walking due to osteoarthrisis of the knee? The patient is certainly demented, but he/she will be relieved from pain if the operation is successful and will be able to walk again. Though the patient may not fully understand the situation, a valid procedure of informed consent is considered to be completed if the patient simply understands that the knee can be cured by surgery and if the family is sufficiently informed of other matters. In such a situation, dementia itself is not a good reason for not treating the patient.
Dementia varies widely in severity from a level that permits the patient to live alone and to a level practically indistinguishable from the vegetative state. Therefore, the modifier 'severe' is often used in ethical evaluation of withholding treatment for elderly demented patients. Yet, from what point does dementia become severe? Also, as mentioned above, the severity of dementia fluctuates in each patient. Then, what does 'severe' dementia that justifies denial of treatment means?
Personhood: Is treatment for severely demented patients discontinued, because they have irreversibly stopped being persons? The definition of the person varies among disputants, but reason, consciousness, identity, self-perception, and ability to communicate are often regarded as cores of the person (2, 3). Some disputants avoid judgments based on the personhood because of its arbitrariness (4). According to the widely expressed definition of the personhood, dementia is considered to be equivalent at least to a state of impaired personality.
If patients are not sure about even who they are, they are not considered to have a 'high' level of personhood or reason. However, if treatment is in fact discontinued simply because the patient lacks or is defective in reason, most of the patients with moderate or more advanced dementia would have been lost. Judgments of whether the treatment should be started or continued are not considered to be made from the viewpoint of 'Is the personhood of the patient intact?' or 'How much is it impaired?' Or, even if the personhood of the patient has been transformed due to dementia or psychiatric disorders from Mr. A to Mr. B, the patient is alive as an object of treatment whoever he or she may be. Therefore, a physician, for whom treating whoever may be the patient is an instinct and a default, would treat the patient if ex-Mr. A is now Mr. B. The case of the family will be discussed later.
Thus, the problem is 'whether the personhood of the patient has been lost completely or not', and what is left after complete loss of the personhood is very basic consciousness, particularly subjective sensations of pain and pleasure after disappearance of reason or self-perception. Even if a patient has lost self-perception and reason and has severely impaired ability to communicate with others, he/she may feel some pain or pleasure as long as consciousness is left. If so, how would the treatment for severely demented patients be affected by whether the patient retains the sensations of pain and pleasure, or the ability to feel pain or pleasure?
Ability to feel pain: What can be said about the suffering that the patient is experiencing is that discomfort such as pain, shortness of breath, and intense itching are probably disadvantageous to the living being in most cases. In making judgments about the patient's ability to feel pain, we care-providers take it for granted that pain is harmful and that alleviation or elimination of pain is beneficial to the patient. The following thoughts are based on this principle that elimination of pain is a benefit. Would the pain that the patient is experiencing give the care-providers 'a reason for not treating'?
The state of severe dementia can be classified into some stages according to the pain that they appear to be feeling. The following 3 scenarios can be conceived. 1) The patient is feeling intolerable pain that is irreversible and untreatable. 2) The patient always seems to be in a very happy state. 3) The patient seems to simply present apparently without feeling anything, either pleasure or discomfort, but not in coma, i.e. in a persistent vegetative state. These patients are in unstable conditions and have uncertain prognoses unlike patients with malignant diseases or in a vegetative state.
Would the pain that a patient in category 1) is experiencing be a sufficient reason for discontinuing the treatment? Unfortunately, the principle of 'elimination of pain = benefit' cannot be applied simply even to such an extreme case, because whether the patient has reached the conclusion that elimination of pain is a benefit after taking all possibilities including death into consideration, i.e. 'the pain I am experiencing is unbearable so that I would rather die than continue suffering this pain,' cannot be confirmed unlike a patient who retains the ability to make competent medical judgments. In general, we consider both the experience of pain and death to be disadvantages. No one can clearly define that elimination of pain in exchange for loss of the self is beneficial in the case such as category 1. The patient is highly likely to be feeling intense pain, but whether or not the pain is so severe that the patient would die to eliminate it is, in fact, unknown. The patient has already lost the ability to think that way. Also, we are not sure how much the patient is suffering. Inversely, the patient may be suffering, but we may simply not perceive it. The appearance may not necessarily reflect the patient's subjective pain.
As mentioned earlier, care-providers are inclined to help patients by a default-like response. If the patient is capable of making judgments, refusal of treatments by the patient himself/herself is a good reason for withholding treatments. Then, can the judgment to have the patient die, because the patient has (more accurately, seems to have) incurable pain be made? This principle of 'elimination of pain = benefit' is often used as a criterion for judgments by proxies. But, the judgment of the patient's 'reasonable benefit' according to objective criteria is based on the subjective estimation by the individuals involved in the judgment and consideration for the patient by his/her family but not on the pain that the patient is actually experiencing. This principle of 'elimination of pain = benefit' cannot be applied automatically even in situations where it seems to be the most applicable. Cases such as 2) gives no warrant for withholding treatments. This is true even when advance directives have been made. This problem is deliberated later. The principle of 'elimination of pain = benefit' is particularly ineffective in situation 3) (5). This situation can be regarded as a variation of the first situation with the extent and nature of pain being more uncertain and unstable.
4. Judgments based on relationships
As has been observed above, none of the age of the patient, dementia, personhood, and the ability to feel pain is likely to be a genuine reason for care-providers to discontinue the treatment for severely demented patients. That is, none of the factors that the patient as an individual being has at present and that are complete in that individual is considered to be sufficient to justify care-providers to discontinue their treatment. Thus, the determination to discontinue the treatment cannot be made on the basis of the patient's condition per se. Actually, however, treatments for severely demented patients seem to be abandoned at some points. For what reasons, then, would care-providers stop the treatment?
If we are correct, reasons for discontinuation of the treatment for severely demented patients arise from the relationship between the patient and the care-providers. Not to mention, this relation is considered to be largely affected by the age of the patient, severity of dementia, degree of destruction of the personhood, and experience of pain, but, as mentioned earlier, none of them are decisive as an independent factor. The human relationships between the patient and care-providers may be maintained as long as the care-providers find some significance in the presence of the severely demented patient and recognize him/her as 'one of them'.
Physician and the patient's family: The relationship with the patient is basically different between members of the patient's family and the physician among the care-providers. For the family, the patient used to be an important part of life. There are overwhelming memories in the past. The relationship between the patient and his/her family is an extension and an afterimage of the past relationship. Members of the patient's family would not consent to discontinuation of the treatment as long as they find a meaningful relationship with the patient. On the other hand, the relationship between the physician and the patient is one between the provider and recipient of medical care. For the physician, the patient is often a demented individual from the beginning, naturally with exceptions. Moreover, in most cases, the patient is primarily an object of treatment. Concerning the discontinuation of treatment, there is no solid reason for the physician to discontinue the treatment as discussed in the previous section. In other words, no positive reason for discontinuation of the treatment springs in the genuine relationship between the physician and the patient. Of course, it is possible that the physician may be vaguely dubious about the treatment for severely demented patients or feel uncertain about its significance. However, the relationship between the physician and the demented patient begins as the patient is brought in and entrusted by the family for treatments and there is no direct relationship between the physician and the severely demented patient from the onset. Therefore, the physician could lose the reason to treat the patient when the family retracts their entrustment for treatments. Thus, major reasons for discontinuation of treatments for severely demented patients are considered to be presented from their families. In the following sections, the relationship between the patient and his/her family is evaluated.
Vague and unstable relationship: Again, the human relationships between the patient and care-providers may be maintained as long as the care-providers find some significance in the presence of the severely demented patient and recognize him/her as 'one of them'. The relationship collapses when the family feels that the patient has lost most of 'human' responses. When the patient ceases to be 'one of them' for the family and is excluded from 'their company', the reason for supporting the demented member of the family is lost. Once the relationship among 'ones of them', which the family has maintained, fails, continuation of the treatment becomes meaningless, leading to its abandonment.
This relationship is extremely unclear. How 'human' a member of the family is depends on each member's discretion. Conditions for a person to be accepted in 'their company' as 'one of them' are also considered to vary from one family to another. In addition, this relationship is extremely one-sided and arbitrary, because the family can unilaterally decide to terminate it. One family may endeavor to maintain the relationship with a member in a near vegetative state while another family may stop regarding the patient as 'one of them' and terminate their relationship with him/her at the point when he/she has become practically unable to recognize them.
The relationship between a severely demented patient and his/her family may also be affected by the strength of their relationship in the past. If the patient has a long history and has developed affectionate relationships with members of the family, they may recognize the patient's past image in the bed-ridden, demented patient and retain relationships as humans. In contrast, if the patient did not have good relationships with other members of the family in the past, they may sooner begin to feel their relationship with the demented member meaningless. If, on the other hand, members of the patient's family felt great affection and pride in the patient before he/she became demented, they may regard the relationship with the patient who has lost the characteristics and properties they used to love as even more meaningless and may shortly make the judgment that the patient is no longer 'one of them'. We do not know how the history shared between the patient and his/her family affects their present relationship.
We are also uncertain about what sustains the relationship between the patient and his/her family. It may be the patient's voice or smile. At any rate, the judgment depends not on the voice or smile itself but on how the other members of the family perceive it and how much value they attach to it. The benefit to the patient and the value of his/her presence lose the individuality or specificity and are subjected to interpretation by the family. For example, if Mr. A has changed to Mr. B due to personality transformation, the changes themselves would not determine anything. The determination to continue or discontinue the treatment would be affected by how the family accepts the member who used to have the personality of Mr. A but now has changed to Mr. B. The treatment will be continued if the family of Mr. A recognizes the personality of Mr. B as 'one of them'. The principle of 'elimination of pain = benefit' will be applied differently depending on how the family understand the pain of the patient. Here again, the greatest factor in the judgment will be the distress of the family, who feel the fact that the patient is suffering as unbearable.
Thus, a being who is dependent on others and cannot live for himself/herself is allowed to live in a vague, unstable, and unilateral relationship. The reason for continuation of the treatment is the vague and unstable relationship. Therefore, the reason for discontinuation of the treatment for a severely demented patient is termination of the relationship between the patient and his/her family.
Present patient-family relationship and autonomy of patient in the past: What effect would the instruction that the patient gave his/her family before he/she became demented (advance directives) have on the on-going relationship between the severely demented patient and the care-providers? Several important problems have been suggested about the concept of advance directives (6). Nevertheless, the advance directives may have considerable effect on the vague and unstable relationship between the patient and his/her family, because they may affect the judgment of the family about their on-going relationship with the patient. The memory of the family that the patient used to say that he/she would not want to live if he/she has lost reason or self-perception may alter their evaluation of the current relationship. The notion that the patient did not hope for such a life would make the family hesitate to continue the relationship. However, some care-providers may not be affected by the advance directives. This interpretation is also left entirely to the care-providers, mainly to the family. After all, the respect for the advance directives means the respect for the family wishes that the patient's past wish about how he/she wanted to die be realized.
5. Conclusion and its meaning
Our conclusion is that the judgment concerning the treatment for elderly demented patients depends on the relationship between the patients and their care-providers, who are primarily their families, rather than the patients' medical or personal characteristics and that the reason for continuation of the treatment is lost, and the treatment is discontinued, when this relationship becomes meaningless to the patients' families. If we are correct, the judgment about the treatment, on which the survival of patients depends, is based on their vague and unstable relationships with their care-providers.
What significance would our conclusion have? On the one hand, it highlights the vulnerability of a being that has lost the ability of judgment and can survive only in total dependence on his/her relationship with others. On the other hand, it indicates the fact that we cannot know everything. We cannot say what is beneficial to a severely demented patient. We may be able to guess it but cannot declare it for certain. However, the awareness of care-providers such as the patient's family and physicians that they are making a serious judgment about a human life with insufficient information and on the basis of an unstable relationship may urge them to do their best to make judgments for the maximum benefit (or so they believe) for the patient. Whether judgments based on vague and unstable relationships are ethically acceptable or not is unknown. Presently, however, there seems to be no practical alternative other than this approach.
Finally, again, our view discussed in this paper has been based on our personal and limited experiences and we have no intension to argue that our experiences are universal. However, although it is rather discouraging, we believe that our outlook deserves to seriously be considered. Rigorous criticism and arguments against our view will be really welcomed.
1. A. B. Shaw. In Defence of Ageism . J Med ethics 1994;20: 188-91.
2. M Tooley. Abortion and infanticide. Philosophy and Public Affairs 1972; 2: 37-65
3. P Singer. Rethinking Life and Death: The Collapse of Our Traditional Ethics. Oxford University Press, 1995, Oxford, p 159-183.
4 Ridley. Beginning Bioethics: a text with integrated readings. St. Martin's Press, New York, 1998, p104-145.
5. JD Arras. The severely demented, minimally functional patients: An Ethical Analysis. J American Geriatrics Society 1988; 36: 938-944.
6. RS. Dresser, JA Robertson. Quality of life and non-treatment decisions for incompetent patients: A critique of the orthodox approach. Law, medicine and Health Care 1989; 17: 234-244.
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