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Life on the slippery slope: a bedside view of treating incompetent elderly patients.

Physicians are practicing in an age of cognitive dissonance, doing much for fragile elderly patients in the short run, even if there is little they can do in the long run. In such a setting, how can one determine what counts as good care?

I need some help, Dr. Niemira. I don't know what to do." The resident standing in front of me was not looking for medical advice. She was looking for ethical guidance in a situation she would encounter in a multitude of variations throughout her career as a primary care physician--how one appropriately treats an incompetent elderly patient.

As a caring physician, she had responded to a family's request to assume care of their relative, who lived in a nursing home. She knew little of the family or the patient when she agreed to take on this responsibility. Her first encounter was an emergency call because of choking and cyanosis. She was quick to size up the medical situation. Here was an elderly woman confined to bed with contractures of her arms and legs. She was deaf and had limited interaction with her environment, although she seemed to recognize her niece and to respond to tactile stimulation. For several months she had had difficulty swallowing and an attempt at placing a percutaneous gastrostomy tube had failed. Review of the available medical records indicated previous unspecified gastrointestinal surgery, several "small" strokes, but no cancer or other terminal condition. There had also been problems with nasogastric tube placement, and family members wanted her to be fed orally despite periodic spells of aspiration.

The incident that brought the resident to the nursing home appeared to be one more episode of aspiration in a chronically ill, debilitated patient with no known malignancy. While incompetent, this woman was clearly not unconscious or in a persistent vegetative state.

As the resident cataloged the treatment options, she decided that aggressive therapy was not warranted and that "care and comfort" should be the treatment goal. The family concurred in this decision and expressed strong sentiments that the patient not be transferred to the hospital. The ethical dilemma arose as the resident attempted to translate "care and comfort" into concrete actions. Suctioning, changing of feeding routines and positions, using supplemental oxygen and analgesics if necessary were all part of basic care. But what about antibiotics to deal with the infectious pulmonary by-product of the situation? Should they be used in this case? She clearly felt antibiotics were indicated, but the family questioned their use, seeing it as an attempt to prolong the dying process.

Was the use of antibiotics in this instance truly a moral dilemma? As I reviewed the medical indications with the resident, she insisted that they were clinically needed. She would not use medical grounds to escape from a practice she considered fundamentally unethical: the withholding of potentially beneficial treatment from an incompetent patient. The treatment that she proposed involved using an antibiotic that could be given as a single daily injection at the nursing home. It was not inordinately expensive. If if failed, she could allow the patient to die, feeling she had provided ordinary care for a potentially reversible illness. She acknowledged that this patient had a chronic problem that was irreversible and that recurrent aspirations were likely. However, she did not feel that death was imminent or life so burdensome for this patient that such simple treatment should be denied. She had been asked by the family to be the patient's physician. She concurred with their decision that no aggressive measures were indicated. But the withholding of antibiotics in this situation, for her, crossed a fine line between allowing to die and causing to die. That others could argue about whether antibiotics were indicated was irrelevant. That the family could request they be withheld was likewise noncompelling. As a physician she felt she had a moral duty to this patient. In the absence of more intimate knowledge of the patient she could not accede to the family's request without violating her own integrity.

The Fragile Elderly

As I listened to the resident, I heard echoes of my own deep-seated questions coming from cases I have encountered over the years. What do I owe my patients who cannot speak for themselves and who exist in a state I consider not worth living? What can I take as a valid expression of their wishes if I never knew them when they were competent and I don't really know their families? What is ordinary treatment and what is burdensome? What is terminal illness when the demented body can be kept going for years if nutrition is provided and infection treated? As a professional trained to diagnose and treat illness and as a moral agent charged to render therapy to the sick, how do I decide to withhold or omit treatment when that withholding or omission implies a judgment about the quality of life of my patient? At what point is incompetence or aging such a burden that any medical treatment, however simple and routine, is unwarranted?

There are no easy answers or clearcut guidelines. These patients are not Karen Quinlans, Nancy Cruzans, or Paul Brophys. They possess consciousness, however diminished, and are able to know both pleasure and pain. At their worst, they resemble Claire Conroy, severely demented yet capable of suffering. They are the unfortunates whose minds have run out while their bodies continue. We arrange to feed them when they have forgotten how, clean them when they are unaware of bodily functions, turn them when they can no longer move. We cannot enter their world to know their pleasure and their pain. Once like us, they have crossed a threshold never to return.

These are the "fragile elderly" that opponents of active euthanasia fear would be eliminated if that practice became legal.[1] They are unable to tell us if they wish to live or die, to be treated or not treated. Often they live in institutions where policy and politics dictate standards of care: who will be accepted, when they must be transferred to the hospital, whether certain treatments can be withheld. They are given flu shots and pneumococcal vaccines to ward off what was once called the "old man's best friend." Yet they develop ulcers and gangrene. Occasionally they become acutely ill or deteriorate rapidly.

As the fragile elderly develop these medical complications, it becomes the responsibility of primary care physicians to determine how they should be treated, or if they should be treated at all. Guided by our compassion, common sense, and comfort level, we must choose for these sick elderly when they cannot choose for themselves. Institutional policy, family desires, and legal guidelines may modify our behavior, but ultimately we bear the burden of the decisionmaking. We are the trained professionals with the knowledge and ability to intervene. Subject to the uncertainty of our craft, we can guess the potential outcome(s) of our actions. We know what can possibly be done; our recommendations to the family carry the weight of our training. At times we can absolve or absorb familial guilt if we say it is best to do nothing, yet following the family's wishes does not excuse us from immoral choices.

Unlike others who can comment from a distance about the moral appropriateness of our actions, unless or until we are fired, we are responsible for making treatment decisions. Perhaps more than we are willing to admit we can decide what symptoms to ignore or acknowledge, what level of intervention to provide or forgo, and what options to recommend or avoid recommending to family members. We are not value-free observers in this clinical encounter. We bring our perceptions of what it means to be a physician and what it means to heal in a situation where 'cure' is a relative and limited term. Unlike our colleagues of some fifty years ago, there is much we can do in the short run, even if there is little we can do in the long. If we ignore a problem until it is too late, if we stand by and do nothing, letting nature take its course, we have implicitly made a decision.

Keeping Them Going for Years

Little has been written to aid us in this process in the nine years since David Hilfiker described our ethical quandary in the New England Journal of Medicine.[2] During this time, treatments that were once complicated and uncommon have become simple and common so that the distinction between ordinary and extraordinary, or burdensome and nonburdensome care has become blurred. Often we can easily treat the early manifestations of potentially fatal illnesses. We prescribe antibiotics for urinary tract infections so urosepsis does not occur. We prolong life and stave off death. This is our double-edged sword, carrying the promise of longevity as well as the shadow of protracted dying.

In the ideal world, we would meet our patients when they were competent. We would have time to learn about their values, their wishes, their fears. We would discuss long-range treatment possibilities, elicit preferences for care under various conditions, and establish medical goals consistent with their personal philosophies and beliefs. We would be partners in care, "primarily patient advocates and only secondarily advocates for various specific forms of medical therapy."[3] We would have some sense of what our patients would want in given circumstances, some estimate of substituted judgment. We would encourage them to name an agent for health care who could voice this judgment.

In the real world this process sometimes happens when patients we already know grow older and cross the line into dementia. We often grieve with their families as we watch them lose unique qualities along with their memories. When they no longer recognize us, we no longer recognize them as the people we once knew. Because we are their primary care physicians we continue to take care of them, modifying our treatment goals to match their physical and emotional needs, previously expressed wishes, and medical conditions. As we treat their acute illnesses we are guided by our previous knowledge of them and what we are told by their agents or families.

In the real world we also encounter patients who are already demented when we meet them for the first time. They are referred to us by nursing homes looking for physicians to care for patients transferred from other areas, by emergency rooms looking for admitting physicians to care for unassigned patients, and by our patients and their friends looking for primary physicians to care for elderly parents who can no longer live alone. Sometimes these patients are acutely ill when we first see them, requiring rapid assessment and urgent treatment if we are to sustain their lives. Occasionally we revive them only to discover that they are in the end stages of malignancy. We may then allow them to die, wondering if our initial resuscitation was in their best interests, realizing that our dictum to err on behalf of life means that they have died twice.

Whether we meet them as friend or stranger, however, these elderly patients often challenge our understanding of our duties to them and to society. Often we are torn by questions of how much of society's resources we should invest in maintaining their lives--how many tests to order, which conditions to treat, what drugs to use. It is clear to us that there are limits; it is not always clear what these limits are or how we should be involved in setting them. Advance directives may be helpful, but often they are not specific enough to be meaningful in concrete clinical situations.

Unlike their competent counterparts who seek medical care if and when they want it, these patients live for the most part under a watchful eye and are brought for treatment they might have declined if they could have. They also live in a time of rapidly expanding medical options that render previous expressions of, "I don't want to be hooked up to machines" meaningless. It is the feeding tubes and the medications that come after or in place of the machines that can keep them going for years. Which of these can we ethically withhold based on that sentiment about machines?

Unless they are truly terminal or permanently unconscious, terminal-care documents do not apply to their condition except to name surrogate decisionmakers. When surrogates are named, they are faced with similar problems of interpretation regarding patient care. If Grandmother Jones once said, "I never want to live like a vegetable," does this mean all medications are to be stopped and her pacemaker turned off now that she is pleasantly but not painfully demented in a nursing home?

Should we, as Mrs. Jones's physicians, even raise the question or should we maintain the status quo and limit our discussion to the management of future events? After all, we do not routinely ask our competent elderly patients if they want to stop their medication. We make the assumption that if they seek our care, they will follow our recommendations or inform us that they choose to do otherwise.

We cannot make this assumption with our incompetent patients. By the nature of their disability, their decisionmaking capacity is absent or impaired and they cannot choose. The best they can do is to object by behaviors such as pulling tubes, combativeness, or withdrawal. In general we do not interpret such objections as refusal of treatment, and we respond to them with medication or restraints if we feel therapy is warranted. We treat these patients more like recalcitrant children who do not know what is good for them than like their age-equivalent counterparts who can say that they have had enough of what is good for them and are ready to face "the next life." We are trapped between playing a role of benevolent paternalism and attempting to reforge a definition of autonomy that can accommodate the obvious decisionmaking impairment. It is a philosophical conundrum that we would prefer to ignore. We are more comfortable with acting than with justifying our actions in philosophical terms. We do what feels right in the context of our beliefs about what it means to be a good physician, struggling as society and technology alter our role.

In this struggle we are in the forefront, yet caught in the middle. We are asked to provide treatment in the midst of conflicting values and rapidly expanding but imperfect technological options. We can treat Mrs. Jones's pneumonia, but we cannot reverse her dementia. We can slow her osteoporosis, but we cannot cure her deformities. We can prolong her survival, but we cannot eliminate her metastatic tumor. Each intervention we prescribe has a price, both to our patient and to our society as a whole. We are questioned about too little care; we are criticized about too much. We ourselves question whom it is we serve. We witness interventions that fly in the face of common sense: elderly patients attached to ventilators and restrained in ICU beds because no one can be found to say "no more"; dying patients who are resuscitated because well-meaning families want everything done. In the name of benevolence, or of a perverted sense of autonomy, we sometimes are accomplices to atrocity. As one New England octogenarian was heard to say when seeing his wife in her ICU bed, "That there's cruelty to animals." We hesitate, but sometimes we must agree with him.

Going against the Grain

As physicians, we are practicing in an age of cognitive dissonance. We are trained to treat and to cure the sick. We are learning to let go and back off in the face of inevitable death. But we are unsure of what to do for those who are neither curable nor dying. We can keep them alive for extended periods and, practically speaking, this is what we do. There are few incompetent elderly patients who are on no medications or who have not been treated for an infection in the recent past. We may, however, temper our treatment, drawing the line at intravenous medication or transfer to the hospital. In doing so, we create a distinction which seems clinically correct, but philosophically resembles the ordinary/extraordinary care distinction, a distinction which courts and ethicists would wish to collapse.[4] Defining what we do as purely supportive care belies the fact that we are providing more than symptomatic relief.[5] On the spectrum of medical therapy, we are providing maintenance or minimal care, treating simple illnesses with standard care, and forgoing technologically more complex or intrusive care. Thus, for a nonterminal nursing home patient with a temperature and cough, we would presume an obligation to treat and probably start with an oral (or an intramuscular) antibiotic. If deterioration occurred we might get aggressive or we might not, choosing to allow time and nature to take their course. If we did get aggressive, we might transfer the patient to the hospital and start IV medication, but refrain from intubating or initiating other invasive monitoring and ICU care. In all likelihood, the treatment will be different from what it was when the patient was living independently, even if his physical status had not changed. We might defend ourselves by saying that he could not understand and accept the burden of treatment as the price of future wellbeing. We might just say it seemed reasonable. If pressed about why we initiated treatment at all, we might defend ourselves by saying oral antibiotics are unintrusive and the patient's condition was not terminal. We might say simply that it seemed right. Intuitively, we would arrive at a choice we could live with, although one we might not be able to defend from philosophical onslaught. We are like those who previously walked reluctantly to "code 99s" for these patients, shaking their heads at what seemed like a fruitless exercise, sensing what studies would subsequently demonstrate about futility but unable to voice a cogent no at the time.[6]

With some decisions--such as ICU admissions--outcome studies may validate our impression that less treatment is kinder treatment.[7] With other decisions such as antibiotic therapy or flu immunizations, survival is clearly prolonged by treatment. Here the decision not to treat implies a value judgment, such as, "Our patient would want no treatment; her life is not worth prolonging; he is using health resources most justly spent elsewhere." Unless we can convince ourselves that our patient would surely want no treatment or that her existence is physically unbearable, it is hard for physicians not to provide therapy that is simple, easy, and relatively cheap. It goes against the grain of our training and tradition.

Watching the Patient Die

Treatment does not have to be an all-or-nothing decision. Care can be stratified along several dimensions. There are levels of intrusiveness, levels of cost, levels of risk, levels of technological complexity. As practitioners, we often discuss and negotiate across the various strata without any ethical dilemmas. It is only when we reach the fundamental, life-and-death decisions that we feel we are treading on holy ground. At times we feel the force of a blunt truth that asks us, Is this patient, who does not know who she is, better off dead or alive? We do not have to administer a lethal injection to effect the outcome. We can wait until her next infection and ignore it, except to provide analgesics for pain or oxygen for air hunger. We can stop her maintenance medications or not monitor appropriate blood levels. We can divert our watchful eye and let her slip away, fed and comforted but not treated. In some but not all circumstances this would be ethically appropriate. It is difficult, however, to define these circumstances clearly.

In the great debate over active euthanasia, ethicists have overlooked the complexities of medical practice and the wide range of passive euthanasia. Occasionally a distinction is made between administering morphine before disconnection from the respirator and doing so afterward--a distinction that only someone not present at the bedside would want to maintain in all circumstances.[8] But there is little or no discussion of turning off pacemakers, stopping insulin in diabetics, or increasing oxygen concentrations in patients with chronic lung disease who require low doses as a stimulus to breathe. If wrongful euthanasia includes omissions as well as commissions, as one prominent theologian would simply, the notion of letting die versus killing needs further clarification.[9]

For those of us practicing bedside medicine, it's less important that society in general and ethicists in particular define the conditions (if any) under which we may actively take a life than that they look at what we do or could do under the rubric of passive euthanasia, and help us define the ethical appropriateness of our actions. At what point should we no longer give Mrs. Jones flu shots or antibiotics for urinary tract infections? At what point may we stop her insulin or blood pressure medications? How should we use her previous statements to help us decide? In the tension between respect for life and respect for autonomy, what are we actually to do?

It has been over two months since the resident presented the case described above. Her patient survived and continues to live without a feeding tube and with limited interaction with the environment. The family of society continues to pay for care. Did the resident do the right thing? Suppose she had concurred with the family, not treated, and watched the patient die? Would she have done the wrong thing?

References

[1.] Frank J. Brescia, "Killing the Known Dying: Notes of a Death Watcher," Journal of Pain and Symptom Management 6, no. 15 (1991): 377-39.

[2.] David Hilfiker, "Allowing the Debilitated to Die: Facing Our Ethical Choices," NEJM 308, no. 12 (1983): 716-19; Office of Technology Assessment, Life Sustaining Technologies and the Elderly (Washington, D.C.: U.S. Government Printing Office, 1987), pp. 335-54.

[3.] David J. Doukas and Howard Brody, "After the Cruzan Case: The Primary Care Physician and the Use of Advance Directives," The Journal of the American Board of Family Practice 5, no. 2 (1992): 201-5.

[4.] Ezekiel J. Emanuel, "A Review of the Ethical and Legal Aspects of Terminating Medical Care," The American Journal of Medicine 84 (1988): 291-301; The Hastings Center, Guidelines in the Termination of Life-Sustaining Treatment and the Care of the Dying (Bloomington: Indiana University Press, 1987), p. 5.

[5.] The Task Force on Supportive Care, "The Supportive Care Plan--Its Meaning and Application: Recommendations and Guidelines," Law, Medicine & Health Care 12 (1984): 97-102.

[6.] Donald J. Murphy et al., "Outcomes of Cardiopulmonary Resuscitation in the Elderly," Annals of Internal Medicine 111, no. 3 (1989): 199-205; George E. Taffet, Thomas A. Teasdale, and Robert J. Luchi, "In-Hospital Cardiopulmonary Resuscitation," JAMA 260, no. 14 (1988): 2069-72.

[7.] S. Ridley, R. Jackson, J. Fiddlay, and P. Wallace, "Long Term Survival after Intensive Care," British Medical Journal 301 (1990): 1127-30.

[8.] David C. Thomasma, "The Range of Euthanasia," American College of Surgeons Bulletin 73, no. 1 (1988): 4-13.

[9.] The theologian is Kevin O'Rourke. See his "Assisted Suicide: An Evaluation," Journal of Pain and Symptom Management 6, no. 5 (1991): 317-24.
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Author:Niemira, Denise
Publication:The Hastings Center Report
Date:May 1, 1993
Words:3871
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