Keeping an Ethical Perspective on End-of-Life Issues
|BY BRIAN GARAVAGLIA, PHD|
| Keeping an ethical perspective on |
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.
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are witnessing, as Finucane suggests, is society’s legal and medical values approving of an individual’s autonomy being superceded by bureaucratic ritualism.2 Kaufman has also addressed this, noting that the American healthcare industry is defining and shaping death and how one should die,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
Doing What Is “Right”
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
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
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.
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 firstname.lastname@example.org .
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