Keeping an Ethical Perspective on End-of-Life Issues

Keeping an ethical perspective on
end-of-life issues

Caregivers can’t necessarily look to paperwork for answers for respecting dying residents’ wishes
Long-term care increasingly has become a separate and distinct part of the healthcare system. As an area of medical specialization, it has its own unique regulations, terminology, and even views of healthcare that separate it from other areas of healthcare. Given its distinct perspective, end-of-life issues frequently have to be addressed, often more so than in acute care settings. Long-term care settings are more personalized than acute care settings and that, coupled with the population’s greater chronicity, leads to long-term care professionals having to deal regularly with end-of-life issues. Nevertheless, many professionals still have a poor understanding of the ethical considerations involved.

The importance of this has become especially apparent after the recent Terri Schiavo case. And it is worth leading off the discussion with a look at some basic ethical concepts.

Resident Autonomy
In examining ethics within the clinical realm, Beauchamp and Childress identify certain core ethical principles that should be evaluated and adhered to: autonomy, beneficence, nonmaleficence, and justice.1 Although all four are key principles, especially as they relate to counseling residents and families regarding end-of-life issues, possibly most important is autonomy. Not only is this ethical principle highly valued because of our culture’s emphasis on individualism, but it is the ethical issue that is transgressed upon most frequently. This is often because clinicians are unable to disentangle a case’s ethical implications from today’s medicolegal environment.

Many professionals fear the specter of litigation that has become all too common. Yet, by embracing this fear, they often attempt to do what is legal while alienating themselves from doing what is ethical. Thus, to avoid potential litigation, they may advise and engage in futile therapy.2,3

What should be prominent in providers’ minds are helping to assist and counsel those with issues such as grief and bereavement, reconciling them to their decisions, and helping residents and families move toward the final transitions of life. However, when technical and legal issues take on primary importance, providers tend to view sympathy and caring for the integrity of the whole person as secondary.2

What we are witnessing, as Finucane suggests, is society’s legal and medical values approving of an individual’s autonomy being superceded by bureaucratic ritualism.2 Kaufman has also addressed this, noting that the American healthcare industry is defining and shaping death and how one should die, 4 but that healthcare workers often experience ethical ambiguity because of the lack of clarity that has become part of this issue. As a result, those who face end-of-life decisions and those who have to help counsel and assist them often have to muddle through bureaucratic rules that override the dignity and autonomy of the dying, while at the same time purporting to adhere to resident rights.

This should not be construed as advocating methods outside of the legal realm, such as assisted suicide or active euthanasia. Rather, the same legal and bureaucratic forces that have promulgated these rules also negate the dignity and autonomy that they state need to be honored.

The Problem With Paperwork
Long-term care practitioners often are not aware of the true parameters of the durable power of attorney. Because it is a legal document bearing the resident’s signature, practitioners immediately view the proxy decision maker as the person who should make the decisions on the resident’s behalf, even when the resident is still able to make his or her own decisions. At a time when cognizant residents have the ability to advocate for themselves, the professionals who should be protecting this right are instead depriving residents of their autonomy. Here again, although staff feel that they are acting consistent with the document’s mandates, their apprehension about failing to act in the appropriate legal manner compromises their ethical conduct.

Doing What Is “Right”
Long-term care professionals often are asked to help counsel families and to help assist with their potential advocacy. Staff members often state what they would do, while at the same time advising proxy decision makers that they have to make decisions based on what they think is right. In this scenario, the professional has advised the proxy implicitly to not consider the resident’s wishes, thereby failing to respect the resident’s autonomy. Although residents and families often will ask those who are counseling them “what they think” or “what would they do,” end-of-life counselors, even though they are bound by the ethical principles of veracity, should advise others without imputing their own values. 5 Telling residents or family members that this is a personal decision and it has to be made by those who know the participants best-the resident or family themselves-is still honoring veracity and avoids imputing one’s own values into the resident’s situation.

Understanding the proxy’s role is critical. As Idziak writes, the preferred standard for proxy decision makers is the “principle of substituted judgment,” in which the proxy is advised to advocate based on the “values and desires of the patient.” 6

Dementia’s Effects on Decision Making
Another issue that many long-term care professionals encounter that leads to ethical problems happens when a resident is viewed as having dementia; no matter how minimal or extensive the disease, the person is frequently placed within a single category: totally incompetent to assist with and make any informed decisions. Although most individuals in dementia’s advanced stages do need someone to assist them with medical decisions, many professionals all too frequently jump the gun on individuals who have dementia in the early stages. Here again we see important ethical implications regarding resident autonomy.

Individuals in the early stages of dementia still usually do have the ability to make their own decisions. However, when they do, their decisions are often ascribed to their dementia, and staff feel obliged to seek alternative input from a responsible party or durable power of attorney. Even though these residents are still able to make informed decisions, they’re being treated as a product of the disease, further stripping them of their autonomy. Dementia may indeed eventually strip these residents of their identity, but long-term care professionals often unethically hasten this process by treating them as if they were totally incapacitated virtually from day one.

Then there are those family members who state that they will make all the decisions, even though the residents are fully competent to do so themselves. Often the family member can become contentious in insisting on the need to make decisions on the resident’s behalf. Sometimes staff will feel that it is better to capitulate to such demands rather than constantly be antagonized by the family member. Here again, however, the long-term care professional has to defend the resident’s autonomy. The need to counsel and inform all staff who are involved of the ethical and legal obligations they hold is imperative.

The Importance of Individualism
In Western societies, autonomy is a value that helps to shape who we are, as well as the essence of our individuality. In normal life, and during periods when we are ill but not incapacitated, we feel quite strongly about defending our right of self-determination. However, as one becomes increasingly infirm or incapacitated, values about autonomy frequently attenuate, and more complexities are introduced as proxy decision makers become involved.7

As Schneiderman has found, sound consultation can help people think more clearly about these issues, thereby reducing the likelihood of futile treatments.8 Yet caregivers counseling residents and families must remember that protecting residents’ autonomy should be of foremost concern and that residents or proxies are ultimately responsible for making important decisions about care.

Almost 300 years ago Immanuel Kant strongly stated the importance of holding firm on these issues. Kant’s concept of ethics was built on obligation. As Kant stated, “Duty is the necessity to act out of reverence for [moral] law.”9 Kant felt that we are ethically bound to honor individuals’ autonomy. Three hundred years later, the issue remains an important challenge to counselors and other healthcare professionals who deal with end-of-life issues.

In an era when ethical issues are complicated by legal paperwork, technologic advances, and bureaucratic rules, evaluating an issue from an ethical standpoint has become more difficult. The difficulties posed by the recent Schiavo case, for example, may have been extreme but are emblematic. Caregivers must be aware of the potential difficulties that they may encounter in end-of-life situations and understand that they must always err on the side of principle and professional obligation.

Brian Garavaglia, PhD, is a long-term care administrator based in Michigan, and a gerontologist specializing in dementia and addictions in older adults. He has worked in geropsychiatry for 17 years and teaches at colleges in the Detroit metropolitan area. To send your comments to the author and editors, please e-mail .

1.Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. New York: Oxford University Press, 2001.
2. Finucane TE. Care of patients nearing death: Another view. Journal of the American Geriatrics Society 2002; 50:551-3.
3. Justin RG. Futility at the bedside: Futile care versus worth a try. Annals of Long-Term Care: Clinical Care & Aging 2005;13(5):17-20.
4. Kaufman SR. And a time to die: How American hospitals shape the end of life. Scribner, 2005.
5. Corey G, Schneider Corey M, Callanan P. Issues & Ethics in the Helping Professions. 6th ed. Pacific Grove, California: Brooks/Cole, 2003.
6. Idziak JM. Ethical Dilemmas in Long-Term Care. 2nd ed. Dubuque, Iowa: Simon & Kolz, 2002.
7. Harris J. Consent and end of life decisions. Journal of Medical Ethics (England) 2003;29:10-15.
8. Schneiderman LJ. Death and dying: Study finds ethics consultations reduce futile end-of-life treatments. Health & Medicine Week 2003;Sept 22:154.
9. Porter BF. Reasons for Living: A Basic Ethics. New York: Macmillan, 1988.

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