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Volume 12, Number 2

Original Article
Broadening the Ethical Focus: A Community Perspective on Patient Autonomy

Eileen Ambrosio, RN, BA, MEd, EdD; Shelley Walkerley, RN

Health care ethics has a 'cultural' bias that is patterned on the organizational culture of our health care system. The ethical issues that are identified and debated within our institutions often are shaped by this organizational culture, and as with any culture to which one has been socialized, its influences remain, to a large extent, indistinct and unrecognized. In the field of health care ethics, these influences can direct teaching, regulate common practices, and determine what is or is not considered to be an ethical issue. The movement of health care outward from the hospital into the community provides an opportunity to explore some of the unexamined assumptions that guide our ethical deliberations. By stepping outside of the hospital culture and viewing ethical issues from a community perspective, the authors examine some of the presumptions and beliefs that lie beneath the usual institutional approach to respecting patient autonomy. Two case stories provide concrete examples of how institutional traditions can direct ethical practice.

Our health care system can be characterized as a publicly funded, hospital-based, academically driven societal institution.1 These same characteristics underlie the health care culture and shape the perspectives of those who work within it; they act as a filter through which knowledge and experience are interpreted and given meaning. Health care practitioners entering this culture accept as 'given' many of the existing policies and practices.2 Without realizing it, many of us who study and teach ethics within the system accept these traditions and customs, incorporate them into our own understanding, and allow them to circumscribe and direct our practice. This ingestion may prevent us from examining, or even recognizing, many of the assumptions that form our beliefs and direct our practices. One example of this influence is our readiness to offer patients a choice about accepting the use of "high-tech" equipment in their treatment but to offer them no choice about access to basic health care resources such as a bed in the hospital. Health care ethics need to address the following questions: Who decides which resources are made available (and to whom)? How are these decisions made? and, On what assumptions are they based?

This paper looks at ways in which the organizational culture of the health care system influences, in practice, respect for the principle of autonomy. Our experiences in providing care for patients in the community challenges us to question both the universal applicability of current ethical guidelines in safeguarding the patient's right to choose, and the commonly held understanding that some resources are open to patient choice while others remain under the control of health care practitioners. Also, we suggest that our society needs to develop equitable practices that make choice in health care a concrete reality, rather than an abstract ideal.

Ethics and the Health Care Culture

In years past, providing appropriate health care presented fewer moral dilemmas than is the case today. Generally, patients were less apprehensive concerning their rights and more trusting that their physician would do for them what was right. Also, in smaller, less culturally diverse societies, the view of what was good was more commonly agreed on. In addition, not much could be done for patients whose diseases or illnesses were life threatening and generally people did not perceive medical treatment itself to be harmful, perhaps because they did not recognize the harm or had not had to live with its long-term consequences.

The growth of urban society and the development of the academic medical centre concentrated disease-specific expertise into particular institutions. Patients who were referred to these institutions and the physicians who treated them met as virtual strangers. Trust levels declined and people came to fear that they would be treated and/or kept alive against their will by complex medical machinery. The civil and consumer rights movements that helped to shape society in the 1960s also influenced the provision of health care; patients began to assert their rights to make their own health care decisions, particularly in situations requiring the use of new medical technology.

Hospitals needed a mechanism to protect themselves from allegations that they acted against the wishes of patients. This mechanism became the informed consent of the patient. Respecting a patient's rights by ensuring a truly informed consent became a task for ethicists, who formulated guidelines to protect patient autonomy in health care choices. These ethical guidelines focus mainly on the need to provide information that will enable patients to make knowledgeable choices. The guidelines state that the competent patient must be (1) given the information he/she needs to choose a health care option, (2) able to understand that information and able to deliberate on it, and (3) able to understand the consequences of choosing or rejecting the proffered options.3

The ethical guidelines for patient autonomy assume that the most important factor in autonomous decision making is the acquisition and understanding of information related to specific illnesses. This is a beneficial and useful assumption when patients are trying to choose between (or among) the different health care options offered by the physician. It is tailored to help people choose among those options made available to them.
 

A View From The Community

Access to health care resources such as beds in the hospital, nursing care, and specialty programs, which were in place long before the emphasis on individual rights, are not made available for choice. Traditionally, in our hierarchical system of health care, the physician has been the gatekeeper for these resources and determines who gains access to them. Usually, people who seek access to these resources are in the community and are offered little or no choice concerning such access. To date, practitioners and ethicists have not recognized or at least have not drawn attention to this lack of choice as an ethical issue. For example, a hospital under economic pressure from the government decides that certain procedures will be done in a day-surgery setting. If a woman needs one of these procedures, and if she hears and understands the relevant information well enough to meet the requirements for an informed consent, all of the necessary systemic conditions are in place to respect her autonomy. However, she may be unable to exercise her choice to have the procedure because she lacks the prerequisites for autonomy. If the woman is homeless, she has no safe place to which she can return after the procedure and has no one to assume the role of care giver. If hospital policy precludes inpatient care for this procedure, her autonomy is limited because she cannot overcome the structural barrier that the hospital policy presents: namely, restricted access to care.

This not uncommon example suggests that we need to take a critical look at the policies and practices of the health care system and to identify underlying cultural assumptions that have influenced the development and direction of health care ethics in respect to patient autonomy. The community can help in this task by enabling us to view the issues from outside of the institutional culture. The following case histories illustrate these issues: one concerns a hospital inpatient, and the other, a woman from the community. Each addresses the issue of patient autonomy from a different perspective.

Case Presentations
In Hospital

Bob, a 67-year-old man, arrived at a local emergency department comatose, in respiratory distress, and severely hypertensive. His family wanted him to be actively treated. Bob was intubated, connected to a respirator, and started on antihypertensive medication.

Although incompetent, Bob's autonomy was respected by the physician who followed the family's directive to initiate the highly technological care.

Bob was admitted to the ICU, and further neurologic testing was undertaken. Neurologic assessment, including a computerized tomographic (CT) scan, showed extensive brain damage from severe hemorrhaging. Confirming a diagnosis of "brain death," the physician informed Bob's family about his poor prognosis and recommended that the respirator be withdrawn. Bob's family, rejecting this recommendation, insisted that the respirator remain in place.

Bob's family exercised their right to act as substitute decision makers for Bob while he was incompetent to make his own decisions. The physicians, believing that it was futile to continue with this treatment, nonetheless respected the patient's right to autonomy and left the respirator in place.

Feeling strongly that it was not in the patient's best interests to continue with this aggressive treatment yet concerned about the patient's right to choose, the medical team sought advice from other professionals. They consulted both the hospital's legal advisors and ethics committee. After some discussion, these consultants advised the team to continue with the treatment despite the diagnosis of brain death and the improbability of a positive outcome.

In this instance, the patient's autonomy, exercised through his family, was respected despite his medical practitioner's conviction that the chosen option was not in the patient's best interests.

In accordance with the family's wishes and in acquiescence to the recommendations of their legal and ethical advisers, the physicians continued with the treatment, and the respirator remained in place. This situation continued until the patient suffered a cardiac arrest and, with the family's agreement, was not resuscitated.

In this case, the autonomy of an incompetent patient is respected because the culture of the hospital, as expressed in its policies and practices, supported the patient's right to choose.

In the next case, the autonomy of a competent woman is restrained by the cultural assumptions, attitudes, and practices of the health care system.

Community

Carol is a woman in her early sixties who lives in a small apartment with her partner. Both are receiving social assistance and, therefore, have a fixed and limited income. Last winter, Carol slipped and fell on the ice and, despite her severe pain, she declined the offers of passers-by to call an ambulance for her. Carol did not want to be taken to the hospital by ambulance because of an earlier experience when she was stranded there in a weakened condition without shoes or money. At that time, she had waited hours for some assistance to return home.

This past experience negatively influenced Carol's ability to exercise her right to choose. She could not choose to go to the hospital by ambulance because she lacked the resources needed to support that choice.

The police assisted Carol to return to her apartment where she remained bedridden because of severe pain. Three days later, a community worker discovered that Carol had not been eating because she had no food. Carol's partner, absorbed with his own health problems, could not provide any assistance. The community worker, using a borrowed wheelchair, took Carol to the hospital by taxi.

While in the Emergency Department, Carol came to believe that the staff were sceptical about the seriousness of her injury. They seemed to question the "urgent" nature of an injury that she had sustained 3 days earlier.

This attitude stems from a hospital culture that assumes that, if an injury is really an emergency, the person will go to the hospital immediately. The fact that someone can cope with an injury on their own for a few days tends to lessen the perceived severity of that injury.

This assumption was evident in the tone of the practitioner who asked, "Well, what brought you in today?" Carol felt as if she were being accused of doing something wrong. Intimidated by what she understood to be a reprimand, she did not respond.

This internal restraint on autonomy gets little attention, because most of the literature describes restraints on autonomy as either external or the result of strong, internal passion (anger, depression) over which the individual is thought to have little control.

Carol's x-ray film showed two linear fractures in her right hip that the physician noted were aligned and would heal. Stating that she would be able to walk after receiving "a real good shot" from the nurse, the physician added the imperative, "You don't want to be in hospital."

This was an obvious assault on Carol's autonomy. She was neither asked what she wanted nor given any options. The physician was using the power of his position as gatekeeper of resources to decide the treatment to which Carol would be given access.

Carol stopped making any further attempts to explain her needs or her situation, and none of the staff asked about her home circumstances.4

Awareness of the home environment is essential when health care is to be carried out in the community. For Carol, this information was crucial because her living circumstances had a major effect on her autonomy.

In light of Carol's living circumstances and because of her pain and immobility, the community worker suggested that Carol be admitted, at least for the weekend. The physician, aware of financial constraints and restricted by the increasingly narrow criteria for admission, conceded that before patients who had similar fractures would have been admitted.

Decisions to restrict the use of health care resources are made at an organizational level that is isolated from individual patients. Rarely is it recognized that these decisions have a major impact on an individual's autonomy, because ethical guidelines for respecting patient autonomy, as formulated, operate at the level of the individual.

The hospital staff's suggestion that Carol be referred to home care was ruled out when they learned that Carol had lost her health card and had not had it replaced. This prevented Carol from gaining access to a walker for home use, because it would have been funded through the Home Care Program. A social worker provided some information about where Carol might be able to buy or rent a walker, but she could not pay for a walker or go and pick it up, even if she had had the money.

Our health care culture focuses on the provision of information as a way of enhancing autonomy. In this case, the information was neither appropriate nor useful, and did not help Carol to exercise her autonomy. Instead, it increased her feelings of powerlessness.

The physician said that the hospital would provide a walker for Carol to take home if the community worker would take responsibility for it.

This time Carol's autonomy was completely overridden. She said nothing at the time but later said she was made to feel as if she were not a responsible person, that she was like a child, or that she did not exist.

A social worker said that she would try to find a way for Carol to get home care despite her lack of a health card. While this might have been successful, the plans for home care had to be aborted when Carol's partner refused to allow strangers into their apartment.

Carol's autonomy was undermined further by her lack of power and her dependent relationship within the home.

Carol was discharged home with a prescription for pain medication; no one asked her if she needed assistance in getting it filled.

Discussion

When Bob arrived at the hospital, he was critically ill. The hospital had resources, policies, and procedures in place to interpret and respond to his condition. It made available legal and ethical resources to deal with issues arising from Bob's compromised autonomy. It employed science and technology to treat him and to determine the cause and outcome of his illness. Although Bob was incompetent, the staff upheld his right to autonomy through his family, who exercised that right by choosing to continue the use of the ventilator. Their choice, though not the option preferred by his physicians, was respected. In questioning this choice, the physicians had access to an ethics committee and to legal experts.

Carol's situation did not require "high tech" resources and did not involve end-of-life decision making. However, the system did not designate the resources Carol needed as options for patient choice. Yet Carol was a competent person; she was aware of her health problems and understood the consequences of not receiving needed care and treatment. It would have been in her best interest to be admitted to the hospital, and she would have readily agreed to this. Such an offer would have respected the principles of both autonomy and beneficence. Although neither of these principles was respected, the health care providers identified no ethical issues in their interactions with Carol. No one asked the hospital's legal advisors or ethics committee to consider the issue of Carol's autonomy.

The differences between the way the hospital culture understood and respected patient autonomy in each of the two cases shows that our health care culture emphasizes ethical issues that involve highly technological resources and end-of-life decision making. The apparent ease with which we can define ethical issues in high-tech areas derives from the way ethics is perceived, taught, and practised in our hospitals. Ethicists, especially those based in a hospital setting, assist physicians as they struggle with complex ethical issues, chiefly in the high-tech areas of hospital health care. This practice keeps high-tech issues salient and provides a vast resource of case studies for ethics education. In contrast, the ethical issues implicit in Carol's situation are rarely acknowledged and seldom become the subject of ethics seminars.

The lack of recognition of and attention to the ethical dimensions of Carol's health care situation raises certain questions: Who has the power to identify an ethical issue as such? Who has access to the ethics committee? Who determines which health care resources are designated as options for choice? To address these issues, we must examine the underlying assumptions of the institutional culture that frames the criteria for respecting patient autonomy.

People in the community do not fear overtreatment so much as they fear the denial of treatment, or not being offered treatment that is appropriate to their needs. A concept of autonomy, focused on informed consent and driven by the belief that the individual's freedom to choose is enhanced by the provision of information and an ability to understand the issues, does not work for those individuals in the community who have the relevant information and understand the issues, but have no control over the resources that they need to make their choice. Creating change within the system will require the combined efforts of ethicists, health care practitioners, hospital administrators, and community members. If they were community based, ethicists would be able to discuss health care issues in a context free from ties to specific hospitals and their policies. This would facilitate their contact with community members and would provide the means for those who are not physicians to identify ethical issues in health care. Hospitals, with input from their communities, could develop flexible policies that would broaden rather than restrict patient options.5 A joint committee set up to reflect community needs and invested with the power to effect change could begin the process. For example, hospitals, especially those in low-income areas, could create a loan service that would supply used crutches, canes, and walkers, or other items not covered by our Medicare program. More complex changes call for an openness to explore the assumptions upon which current practices rest-and the courage to challenge the culture of the system.

Summary and Conclusions

In the North American health care culture, identification of ethical issues has been strongly influenced by the introduction of high technology and by the public's interest in end-of-life decision making. Developed from an institutional perspective, health care ethics has formulated sound guidelines concerning conflicts that have arisen with the expansion of medical knowledge and the use of complex technology within institutions. However, as health care moves into the community, we must re-evaluate these guidelines. Community health care ethics are less likely to be concerned with high technology resources and individual independent treatment choices than with issues concerning powerlessness, dependency relationships,6 and limited access to resources.

The movement of health care from the hospital into the community provides us with a challenging opportunity to broaden our ethical perspective. We must rise to this challenge.

Acknowledgements

We wish to express our appreciation to Ase Hallgren for her valuable contribution to the community-based story.

References

  1. Barondess J: The academic health care center and the public agenda: Whose three-legged stool? Ann Intern Med 1991; 115: 962-967
  2. Jameton A: Culture, morality and ethics: twirling the spindle. Crit Care Nurs Clin North Am 1990; 2 (3): 443-451
  3. Beauchamp TL, Childress JF: Principles of Biomedical Ethics, (14th ed) Oxford Press, New York, 1989: 73-83
  4. McCurdy DB: Respecting autonomy by respecting persons: taking the patient's story seriously. Humane Med 1990; 6 (3): 107-112
  5. Singer MA: Community participation in health care decision making: Is it feasible? Can Med Assoc J 1995; 153 (4)421-424
  6. Collopy B, Dubler N, Zuckerman C: The ethics of home care: autonomy and accommodation. Hastings Center Rep 1990; (Spec Suppl): 1-16
This paper is based, in part, upon a Keynote Address-Nursing Ethics in the '90s' Nursing in a Diverse Society "-delivered on October 1, 1993.
Correspondence and reprint requests to: Eileen Ambrosio, c/o Street Health, 315 Dundas Street East, Toronto, ON M5A 2A2