Toward Ethical Guidelines Of Terminal Care

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The analysis of this chapter so far has emphasized that morally appropriate care of a terminally ill person should always involve care for a person as an integral human being until the end of life even though a primary illness may not be successfully treated. It can be further argued, on ethical grounds, that more can and should be done toward improving the care of the dying person than is presently the case in North America. Given this premise, in what follows, a general principle and some ethical guidelines are presented. As ethical reflections, arguments are made concerning how terminally ill persons should be cared for, not what is actually practiced in all cases.

While it may be true that a terminally ill person has reached a point at which no known cure is possible, it is never true that ''nothing more can be done.'' As a normative principle, one can always care for a terminally ill person until the end of that person's life and provide palliative treatment relevant to the patient's condition. It is never true that the only ethical alternatives for a patient are either to give consent to an experimental therapy or to choose death. In many instances, the ethical priority is to assist a person in living out his or her remaining days, weeks, or months as meaningfully and peacefully as possible. Under proper care, a dying person's remaining days can be some of the most meaningful, including significant relationships with family and friends. Unfortunately, the principle here presented can be platitudinous or empty unless it is supported by specific guidelines for implementation. Consequently, the seven guidelines that follow are intended to promote the well-being (quality of life) of those persons who are terminally ill. Further, they are open ended and are also intended to promote discussion rather than foreclose it.

Guideline 1: Respect and Self-Integrity to the End of Life

The dying person should be accorded respect, dignity, and a sense of self-integrity with purpose and fulfillment to the end of life. Respect is both an attitude, which is commonly thought to be fundamental, and a principle of individual conduct and social organization. It is to value persons intrinsically. It is to have regard for a human being independent of particular characteristics. Some have argued that such respect is best described as love-agape (Downie & Telfer, 1969). In this sense, those who care for dying persons are being asked to be responsive to the highest level of relationship to another human being. Mere sentimentality and smothering care, on the other hand, are neither adequate nor appropriate. As much as a healthy person, the terminally ill patient has the need to be seen and treated as a self-integral individual. In practical terms, care of the dying cannot afford to be impersonal or insensitive to the lifestyle of the individual and his or her individual needs. Without such attention, respect and regard for the benefits of otherwise important medical techniques will be vitiated.

Guideline 2: Symptom Control

All symptoms should be treated and controlled as long as possible and as long as such treatment provides comfort to the patient. For the well-being of a dying person, it is important to realize that an appropriate therapy (and often the only proper therapy) is symptomatic treatment. The comfort and well-being of an individual patient may often hinge on effective relief from symptoms and having each symptom treated as it arises. Symptoms may range from minor irritations to serious distress, including dysphagia, anorexia, constipation, nausea, vomiting, incontinence, hiccup, cough, breathlessness, restlessness, and confusion (Enck, 1994; Saunders & Baines, 1989). Attending to the details of each symptom is important. Indeed, it has been shown that relief of minor symptoms often goes a long way to relieve the pain accompanying any serious illness. A patient who is terminally ill with cancer and is at the same time suffering from untreated constipation is a neglected patient, however much effort is or has otherwise been extended on that patient's behalf. Such treatment may not be heroic or dramatic, but is nevertheless important. Often those who compile lists of ways of relieving symptoms are apologetic for their simplicity, but it is all of the niggling things that can detract so much from the dying person's well-being. Consequently, it is important to exercise imagination and perseverance in relieving symptoms. Such care is, indeed, a positive approach to the treatment of a dying person.

Guideline 3: Pain Control and Prevention

A dying person should be assisted to live out his or her remaining days or weeks with minimal or no pain and remain, as fully as possible, normally alert. Among all the factors associated with dying, pain is probably the most dreaded and feared. Moreover, expectation and anticipation of pain is itself self-perpetuating pain. In most cases, the pain endured by a dying person serves no useful purpose. It does not serve as a warning or protective signal or as a diagnostic aid, as in the case of injury. Sometimes, pain associated with dying is categorized as long-term, chronic pain or as terminal pain. Professionals who care for terminally ill persons frequently describe the pain experienced by patients as ''total'' pain. The designation is intended to indicate not only that pain has multiple components, but that patients may feel that ''everything is wrong,'' meaning that one's whole being is consumed by pain.

In recent years, significant advances have been made in pharmacological research and in care practices to control and prevent pain in terminally ill patients (Corless, 1994; Enck, 1994; Saunders & Baines, 1989). Considerable evidence exists that successful pain control is fully possible with proper employment of a variety of available therapies (drugs, surgical procedures, radiotherapy, and so on). Unfortunately, too many patients are denied relief or are improperly treated. Undertreatment with narcotic analgesics of patients with severe pain is common. Failure to follow basic and enlightened principles of pain control as well as prevention and lack of training in terminal care are major contributors (Enck, 1994). In addition, there are misconceptions about the use of strong analgesics, including misconceptions about addiction, tolerance, and fear of escalated dosages. These misconceptions and fears are the basis of the most prominent ethical issues on pain control and prevention in terminally ill persons.

Frequently patients, relatives, physicians, and nurses express fears of ''addiction'' to strong analgesics, especially morphine and morphinelike agonists. There is often an ethical wish for the patient or relative not to die experiencing the remaining days of life as a ''drug addict.'' Although some have wanted to alleviate such fears by suggesting that it should not matter in the final days of a terminally ill patient if pain relief is obtained at the expense of addiction, the fears of addicting patients to opioid analgesics are scientifically unfounded (Enck, 1994; Saunders & Baines, 1989; Twycross, 1974). That is to say, empirical study evidence suggests that so long as appropriate doses of opioid analgesics are administered on a regular basis, such as every four hours, to control and prevent pain of cancer and other chronic diseases, the risk of either psychological or physical dependence is almost nil. The ethical issue of whether the use of opioid analgesics will cause addictive side effects is vastly overblown, and fears are misplaced if care in controlling and preventing terminal pain is provided with proper doses of drugs. Current terminal-care practices do not recommend the use of drugs to control pain on an ''as-needed'' (p.r.n.) basis since that causes a ''peak and trough'' effect and a lack of around-the-clock pain management and prevention (Enck, 1994). Administering a narcotic like morphine ''on demand'' places additional burdens on the patient, who will often try to endure the pain as long as possible or engage in clock watching for the next injection. Patients should be relieved of such burdens as well as enabled to forget about any possible pain and enjoy life that is left (Corless, 1994).

It is also a very common fear and argument that use of narcotic drugs with terminally ill patients will turn them into ''zombies.'' If a patient is given sufficient drug therapy to relieve the pain, it is argued, this will likely be at the expense of a rational or normally alert existence. Again, if drugs are properly administered for maximum benefit and dosages are continually reassessed and adjusted accordingly, there is no evidence to suggest that pain cannot be controlled while maintaining patients' normal alertness. Likewise, the issue of tolerance may have precipitated an unfounded ethical claim about caring for terminally ill patients. Some patients and physicians fear that the use of strong analgesics ''too soon'' will limit the effect of such agents later when they are perceived as absolutely necessary. Again, studies suggest that such a fear is unfounded and that tolerance is at best a minor problem that can be managed by gradual increases in the dosages of narcotics (Enck, 1994; Saunders & Baines, 1989; Twycross, 1974).

Evidence suggests that technology is currently available to control and prevent pain in terminally ill patients if it is administered fully, properly, and with continual assessment. Nevertheless, more can be done for terminally ill patients in control and prevention of pain than is currently the case in the American care system. The predicament is due in part to inadequate training of clinicians in pain assessment and management. Significant ethical priority should be given to correcting these inadequacies as well as continuing the advances in research on effective pain control and prevention.

Guideline 4: Providing the Opportunity to Clarify Relationships

The dying person should have the opportunity to clarify relationships, to continue and develop normal friendships, and to know the truth. A terminally ill patient should be cared for both as an individual and as a social being. The importance of family, friends, and the atmosphere of community, whether a dying person remains at home or is admitted for inpatient care, cannot be overemphasized. Social interchange is just as much an ordinary function of life with the dying person as with the healthy. Physicians and nursing staff cannot afford to be impersonal. Loneliness and isolation due to or perpetuated by a particular care system are inexcusable. Together with adequate physical care, the dying person who has sufficient human companionship will be relieved of much anguish.

The dying person should know the truth about the diagnosis and prognosis unless, of course, that person explicitly requests not to be told. Personal autonomy should be honored, but helping patients to realize and accept the truth will many times require extensive skill at communication and patience. It is, therefore, important how one communicates to the dying person, and even more important, that one listens to the dying person. Attending persons (the care team, relatives, and friends) should not engage in evasions and deceptions. These can only add to a sense of loneliness, frustration, and abandonment.

Guideline 5: Rights to Care

The dying person should be accorded all rights due to any patient, including the right to make care requests, to refuse treatment, to be consulted about types of care, and to voice and be heard concerning his or her current and changing state of well-being. The dying patient has a right to be active, as long as possible, in decisions concerning care and treatment. Attending persons and relatives should not be overprotective of the patient or create a sense of unreality. To be cared for may be helpful and comforting; to be taken care of may be demeaning.

Guideline 6: Sharing and Planning for Changes

The dying person should be given the opportunity, when possible, to share in planning for changes that death will impose on the survivors. Attending persons should assist in making resources available for planning by the patient and for sharing concern for the relatives, both during the process of dying and after death. Such planning could include planning for the distribution of one's estate, discussing how decisions will be made in later stages of care if one becomes decisionally incapacitated, and sharing the concerns of relatives and their futures. Care should always be extended to the family and not just to the terminally ill patient, and this should include the grieving process. Families should not be cut off from care once the patient has died. Hospice programs have attempted to provide a place for families after the death of the patient, including grief counseling; acute-care institutions have not.

Guideline 7: Dying in a Familiar Environment

The dying person should be accorded a familiar environment, one with familiar things and familiar faces, or surroundings as nearly homelike as possible. It goes almost without saying that most people, if given a choice, would prefer to live out their last days in the familiar and often comfortable environs of their own homes, though there may be some variation in preference depending on ethnic group or religious persuasion. In any case, patient preferences should be honored as much as possible. Acute as well as terminally ill patients frequently prefer to be surrounded by persons and possessions that are familiar, not by strangers and strange circumstances. The familiar surroundings and faces help to relieve the psychosocial suffering encountered in the dying process and allow for free and uninhibited communication between the patient and family. Indeed, the home care of dying patients by hospice programs, widely practiced in the United States, has several advantages, including that of affording the patient greater opportunity to regain control over his or her life and death.

Terminal home care can often produce a remarkable closeness among the patient, relatives, and friends. Families can experience a greater sense of involvement in the care of the patient and sharing in the remaining days of their loved one than when a terminally ill patient is in a hospital or institution. This sharing can include, in diverse ways of expression and presence, in-depth listening and saying ''good-bye.'' Not only are physical comfort and privacy realizable benefits from home or homelike environments, but it is more likely that a continuity with normal, everyday life can be maintained. Care delivered at home, for example, can be intensely personal and rewarding for all involved. Though home care may not always be the best course or even a possible course for all patients, the benefits and virtues that it can provide ought to be a goal of all terminal-care situations and a priority of any ethics of terminal care.

CONCLUSION

The various topics discussed in this chapter on the ethics of terminal care, especially the seven guidelines specifically offered, are not intended to foreclose discussion, but to stimulate it further. Effective and ethical care of terminally ill patients has grown substantially in the past 20 years in the United States, especially through the development of hospice programs and improvements in symptom and pain control. However, it is also a sober reality that most terminally ill patients are not receiving care that reasonably approaches the standards of good and proper care or what would fulfill an ethics of terminal care as outlined here. Fully effective care for terminally ill patients will entail changes in policies, practices, and systems of access and delivery. Flexible and innova tive approaches must be developed. Training in caring for terminally ill patients should be a part of curricula in all medical and nursing schools. Additional and more advanced training should be more widely available. Research into the effectiveness of terminal care, including institution of improved standards of care, development of outcome measures, and research into improved substances and methods of use in pain and symptom control and prevention, are essential. These changes and continued developments could lead to greater and more humane care for all dying persons, which, by the definition of mortality, will include all human beings.

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