Legal and Ethical Issues of Life and Death

As advances in medicine expand the possibilities of life, postpone death, and expand the knowledge of the genetic and molecular makeup of human beings, new issues emerge in the legal and ethical issues of life and death. The United States Supreme Court has legalized the right of every individual to prepare health care directives concerning the nature and extent of end-of-life treatment and care. Less accepted is the concept of physician-assisted suicide, in which the health care provider assists the individual in selecting the time and manner of his or her death. These issues are complicated further when the patient is poor or mentally or physically challenged. Additionally, there may be limits on financial and medical resources, further requiring individuals and their families to make hard decisions about life and death. This article will explore some of the contemporary legal and ethical issues of life and death in the United States.

Keywords Advance Care Directives; Americans with Disabilities Act; Antitrust Laws; Cannabis; Health Care Proxy; Living Will; Marijuana; Medical Power of Attorney; Palliative Care; Patient Self-Determination Act; Physician Assisted Suicide (PAS); Resuscitate; Schiavo, Terri

Sociology of Health & Medicine > Legal & Ethical Issues of Life & Death

Overview

A large metropolitan hospital receives a call that an infant in critical condition is arriving for care. All of their extracorporeal membrane oxygenation (ECMO) machines, which give blood oxygen outside the body when a ventilator is not sufficient, are in use. What is the ethical thing to do? Place the new patient on an ECMO machine because they are critical? First come, first served? Or should the doctor consider which children have the better prognosis and treat them first?

Famed New York Yankees slugger Mickey Mantle was inducted into the Baseball Hall of Fame in his first year of eligibility in 1974. Mantle suffered from alcoholism, cirrhosis of the liver, and hepatitis C, and seems to have been inducted into the liver transplant program at Baylor University Medical Center in Dallas, Texas, with equal ease in 1995. Despite a terrible prognosis and a long line of patients also waiting for a liver transplant, Mantle received the transplant and lived only another two months. Public outcry over the power of celebrity and how transplant organs are allocated raged for months.

The legal and ethical considerations of life and death are numerous and without absolute answers. They can be complicated further if the patient is elderly, mentally or physically challenged, poor, and/or without sufficient health insurance. In an ideal world, none of these conditions would be the basis for making life and death decisions. But as society makes unimaginable medical advances, the price tag for these life-saving treatments continues to soar. Individuals, and state and federal governments, are staggering under the huge bill for health care insurance and treatment.

Sociologists, legal theorists, politicians, and the public are interested in these matters as evidence of social change and the tensions between personal freedom and public constraints upon those freedoms. Although the Declaration of Independence mentions "life, liberty, and the pursuit of happiness," for example, there is no mention of privacy rights or individual freedoms pertaining to biological and/or medical issues. Given our country's Puritan/Protestant religious background, rule by the majority has dominated many of these ethical and legal matters for centuries. Over the last forty years, however, emergent medical advances and beliefs in privacy and personal decision-making have changed the landscape of debate. All across the nation, scholars see evidence of the struggles between traditional values and emergent personal freedoms on local, state, and national levels. On the other hand, some of these issues, such as the allocation of transplant organs or setting limits on medical interventions, are caused by relatively recent medical breakthroughs that have no precedent in modern society. In some ways, it is difficult for society to debate these issues since the two means of resolution have been the courts and legislative action. How different groups conceptualize each of these issues, and how the larger society engages in the debate and temporary resolution of these matters is of major interest to sociologists interested in social change and ideological/social conflicts.

Further Insights

Advance Care Directives

In terms of end-of-life care, normative statements from the American Medical Association state that "the primary consideration should be what is best for the individual patient" (American Medical Association, 2007b). Physicians are not required to provide care that has no "reasonable chance of benefiting the patient" (American Medical Association, 2007c). If the medical interventions are viewed as futile, then the process changes into one of making the patient comfortable and pain free, both mentally and physically.

Advance care directives are formal, written, and signed documents that provide legal and medical instructions concerning an individual's wishes for their medical treatment, even when they are no longer able to actively participate in those decisions. Often called a "living will," "health care proxy," or "medical power of attorney," these types of documents empower a surrogate decision-maker or caregiver and delineate the treatments desired or refused during illness or at the end of life. Often included in these documents are "do not resuscitate (DNR)" instructions in the event that a patient suffers cardiac or respiratory arrest and their medical condition does not warrant cardiopulmonary resuscitation. Individuals with inoperable, terminal medical conditions or those facing a long-term coma with no hope of recovery are most likely candidates for DNR orders.

State and federal laws encourage these types of patient decision-making in order to avoid court-ordered determinations of the patient's wishes. In 1991, the US Congress passed the Patient Self-Determination Act (PSDA), which mandates that any health care institution receiving Medicaid or Medicare funds must inform patients of their right to self-determine their end-of-life care. Despite this law, and the ugly legal battles played out in media and political circles, estimates are that fewer than 29 percent of adult Americans have advance directives. The failure to make these important medical and legal decisions can place the patient, the family, and medical care providers in an expensive and complex legal battle over what should be done on the patient's behalf.

That was the situation in the famous Terri Schiavo case, in which both the state of Florida and the then-conservative United States Congress intervened to try and stop the removal of feeding tubes for Schiavo, who had been in a persistent vegetative state for fifteen years. In 1990, Schiavo suffered irreversible brain damage after experiencing both respiratory and cardiac arrest. In 1998, Schiavo's husband petitioned the court to remove the feeding tubes, arguing that Schiavo would not have wished to continue to be kept alive in such a condition. Schiavo's parents disagreed, and the ensuing legal battle took seven years and involved both the Florida and the United States Supreme Courts. Although both federal and state congresses attempted to pass laws prohibiting the removal of the feeding tubes (and some ardent Congress members sought to have Schiavo qualified for the federal witness protection program), ultimately the courts permitted the feeding tubes to be withdrawn. Two weeks later, Terri Schiavo died at the age of forty-one. Pro-life advocates called the court's decision "judicial murder," while disability advocates were on both sides of the debate.

Issues

Physician-Assisted Suicide (PAS)

Physician-assisted suicide (PAS) is "when a physician facilitates a patient's death by providing the necessary means and/or information that enable the patient to perform the life-ending act" (American Medical Association, 2007). Arguments in favor of PAS are that individual autonomy should be respected, as well as individual liberties, and that it is simple justice since the individual already has the right to refuse treatment. Why should they not have the right to choose when they die? Some consider PAS to be a compassionate solution to terrible pain and suffering. Finally, others argue that PAS already is occurring, particularly in the use of morphine drips that lessen pain but also negatively impact the respiratory processes. To make PAS legal would be to bring the discussion of end-of-life options out into the open for both the patient and the physician ("Physician Assisted," n.d.).

Opponents of PAS argue for the sanctity of life and make the distinction between letting someone refuse further medical treatments and actively taking an action that will end his or her life. They also argue that it is necessary to preserve the integrity of the medical profession as healers, and, in fact, the American Medical Association disagrees with PAS for this reason. Anti-PAS advocates argue that mistakes might be made through an erroneous diagnosis or colored by a patient's deep depression and that with the proper treatment, the patient might live a full life. And finally, they argue that abuses might occur so that poor or elderly patients might be offered PAS as a means of avoiding more expensive medical treatments and palliative care ("Physician Assisted," n.d.).

Oregon, Washington, and Vermont are the only states that permit a physician to aid in a suicide, while suicide attempts and suicide are not criminal acts in any state. In Dying v. State of Washington, a federal appeals court ruled that individuals do have the right to choose how and when they die. Similarly, another federal appeals court found that a New York law barring PAS violated the Fourteenth Amendment, which states that no state can "deny to any person within its jurisdiction the equal protection of the laws." The United Stated Supreme Court, however, ruled that there is no constitutional entitlement to physician-assisted suicide, although patients do have the right to refuse medical treatment. The Supreme Court made it clear that the decisions about physician-assisted suicide should be left to each state under the state's rights doctrine ("Physician Assisted," n.d.).

Organ Transplants

Organ donors can be living or deceased. The major organs and tissues transplanted are the heart, kidneys, liver, lungs, pancreas, and intestines. Also transplanted are blood, bone marrow, bone, tendons, corneas, heart valves, veins, and skin (US Department of Health and Human Services, n.d.). Transplant rejection of the new organ or tissue historically has been a significant bar to long-term, successful transplants, until the development of the drug cyclosporine. Today, 90 percent of patients survive for a year after the transplant, and 72 percent survive for five years ("Heart Transplant," 2008). Many patients live for more than a decade following an organ transplant. In 2006 2,192 patients received heart transplants; the following year 2,210 patients received transplants ("Heart Transplants: Statistics," 2009). Now that organ transplants have become routine and drug protocols have been developed that reduce the likelihood of transplant rejection, a lack of organs and tissues for transplant has become a critical problem. The legal and ethic considerations now are who should receive priority donee status and which living individuals should be allowed to be donors.

There are several processes by which human organs and tissue are obtained legally. One of the most successful is a donation made by a living relative of the recipient. Because of similar genetics and strong emotional ties and the possibility of saving the life of a loved-one, these exchanges are not only biologically favorably, but emotionally as well. Because the tissue has the highest possibility of being genetically similar, the odds of tissue rejection can be diminished considerably. Unfortunately, not all living relatives are a match, just as marital partners are not a match usually. In these situation, one favored procedure is called a "paired-exchange." The donee's spouse or other willing donor is matched with another individual in the larger transplant community who needs the same organ, and their donor is matched with the original donee. Harvesting of the two donated organs and their subsequent transplantation are all timed simultaneously to diminish the possibility that one of the organ donors will back out of the deal once their loved one has received a transplant. Because of the national organ transplant registry and a plethora of additional websites, individuals can be "good Samaritans" and voluntarily provide organs or tissue to someone unknown or less known to them ("Kidney Transplant-Paired Exchange," 2009).

In some countries, the buying and selling of transplant organs is legal, although in developing countries the donor is often paid very little for their organ because they may not fully understand the consequences of their actions since they are desperate financially. In the United States, the National Organ Transplant Act of 1984 made the sale of organs illegal in this country. It also formed the Organ Procurement and Transplantation Network (OPTN), that determines who should receive the next available organ ("Legislation and Legislative History," n.d.). Potential kidney recipients are holistically evaluated by a number of factors like blood type, age, geography, and how long they have been on the waiting list; potential liver donation recipients are evaluated by an empirical disease score to determine necessity ("Matching Process-The Waiting List," n.d.).

One final form of organ acquisition is forced donorship. Up until a few years ago, most Chinese organ donations came from executed prisoners. In October 2007, under pressure from the World Health Organization and other advocates, the Chinese Medical Association agreed to a moratorium on the forced harvesting of organs from prisoners, and it is unknown if this process continues (Shimazono, 2007).

In order to bypass altogether the need for organ donorship from humans, scientists are working on xenotransplantion, the transplanting of tissue from the body of another species into the human who needs the new organ. To date, the transplant of a baboon heart into a human body has failed, as have other variations on this effort. Not surprisingly, this process is very difficult and it will be years before it is established as a viable option.

Medical Use of Marijuana

Over the past decade, the debate over the medical benefits of marijuana (cannabis), and cannabinoids (substances that are chemically similar to and that mimic the effects of marijuana) has increased. Although a majority of Americans are familiar with smoking marijuana, health professionals agree that the act of smoking causes respiratory damage. Thus, significant research is being undertaken to develop synthetic drugs from the cannabis plant or to use its herbal properties for tinctures and other ingestible medications. Recent studies have shown that marijuana may be useful in the treatment of nausea caused by chemotherapy, glaucoma, cachexia, chronic pain, epilepsy, and multiple sclerosis. (American Medical Association, 2001; National Institute of Health, 1997; National Institute of Health, 2007).

In the United States, marijuana possession, use, or distribution is illegal on the federal level due to the Controlled Substance Act. Exercising their constitutional state's rights, however, the following twenty states have adopted medical use marijuana laws, along with the District of Columbia: Alaska, Arizona, California, Colorado, Connecticut, DC, Delaware, Hawaii, Illinois, Maine, Massachusetts, Michigan, Montana, Nevada, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, and Washington. California was the first state to adopt such laws in 1996. Several states also have adopted laws that reduce the penalties for marijuana possession for individuals with proven medical necessities. Most of these states limit the quantity that any individual may possess for medical purposes to less than one or two ounces and a dozen homegrown plants. Support of medical marijuana is growing nationwide, in both medical and political circles, and one can expect an increase in the legalization and use of this medical treatment in the future (National Organization for the Reform of Marijuana Laws, 2008).

Antitrust Laws

Antitrust laws are intended to protect the public from unfair business practices and lack of competition in the marketplace. The health care industry is becoming more vertically integrated, meaning that there are monetary relationships between the individuals and entities at the commencement of care, related to those in the management and insurance, and related to hospitals, clinics, and laboratories. Doctors, for example, may own the laboratories to which they send their patients, and therefore, order expensive tests to be conducted. Conversely, the insurers or health care institutions may penalize the doctor for ordering too many or too expensive tests, and thus restrict the care needed for the public. Heightened federal or state regulation scrutiny may occur if the entity has:

• Significant market share;
• Joint action with other actors;
• Denial or limitation of professional privileges of other practitioners; and,
• Involvement in a merger, acquisition, joint venture, provider Network, or other integrated delivery system (American Medical Association, n.d.).

Obviously, sociologists interested in the medical delivery system would find these issues of interest, as should those who are concerned with unequal medical care based upon age, race, class, gender, or disability.

Patients with Disabilities

Special circumstances arise when the patient has mental or physical challenges that complicate his or her medical situation. In 1990, the Americans with Disabilities Act (ADA) was passed by Congress and is the first civil rights protections for people with disabilities. The ADA prohibits discrimination in employment and services based upon one's disability status. In terms of legal and ethical considerations of life and death, it means that a physician must make a reasonable effort to accommodate a patient with disabilities. As part of a requirement to provide "auxiliary aids and services," physicians must make an effort to communicate to the patient with disabilities through an appropriate means. In terms of a patient with hearing difficulties, for example, this means that the physician must assess whether written communication, telecommunication devices, or an sign-language interpreter would provide the necessary assistance, and then provide that resource for the patient. If this obligation places an undue burden upon the physician, such as significant expenses or difficulty, or it fundamentally alters the nature of the services normally offered, then alternatives are possible so long as the communication is effective. Obviously, the choices of the patient should bear serious consideration and the physician cannot pass the expense of the accommodation on to the patient.

Terms & Concepts

Autonomy: Independence or freedom.

Extracorporeal: Occurring or situated outside the body.

Palliative Care: End-of-life care provided to relieve or lessen pain or symptoms without curing them.

Protocols: The plan for a course of medical treatment or for a scientific experiment.

Resuscitate: To revive from apparent death or unconsciousness.

Bibliography

American Medical Association. (2001). Report 6 of the council on scientific affairs (a-02) medical marijuana. Retrieved February 5, 2009, from http://www.ama-assn.org/ama/no-index/about-ama/13625.shtml

American Medical Association. (n.d.). Americans with Disabilities Act and hearing interpreters. Regulatory Compliance Topics. Retrieved October 10, 2008 from: http://www.ama-assn.org/ama/pub/physician-resources/legal-topics/regulat tory-compliance-topics/the-americans-disabilities-act-hearing-interprete ers.shtml

American Medical Association. (n.d.). Antitrust. Business Management Topics. Retrieved October 10, 2008 from: http://www.ama-assn.org/ama/pub/physician-resources/legal-topics/busines ss-management-topics/antitrust.shtml

American Medical Association. (2007a). Physician-assisted suicide. Code of Medical Ethics: Opinions on Social Policy Issues. Retrieved February 5, 2009, from http://www.ama-assn.org/ama1/pub/upload/mm/Code%5fof%5fMed%5fEth/ opinion/opinion2211.html

American Medical Association. (2007b). Quality of life. Code of Medical Ethics: Opinions on Social Policy Issues. Retrieved February 5, 2009, from http://www.ama-assn.org/ama1/pub/upload/mm/Code%5fof%5fMed%5fEth/ opinion/opinion217.html

American Medical Association. (2007c). Futile care. Code of Medical Ethics: Opinions on Social Policy Issues. Retrieved February 5, 2009, from

Garwood, P. (2007). Dilemma over live-donor transplantation. Bulletin of the World Health Organization, 85. Retrieved February 5, 2009, from EBSCO online database, Academic Search Complete. http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=24049511&site=ehost-live

Heart transplant. (2008). Retrieved February 5, 2009, from Mayo Clinic. http://www.mayoclinic.com/health/heart-transplant/MY00361/DSECTION=results

Heart transplants: Statistics. (2009). Retrieved February 5, 2009, from American Heart Association. http://www.americanheart.org/presenter.jhtml?identifier=4588

Himchak, M. V. (2011). A social justice value approach regarding physician-assisted suicide and euthanasia among the elderly. Journal of Social Work Value and Ethics, 8, 57–70. Retrieved November 5, 2013 from EBSCO online database SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=60827665

Kidney Transplant-Paired Exchange. (2009). University of California, San Francisco Medical Center. Retrieved February 5, 2009, from http://www.ucsfhealth.org/adult/special/k/113180.html

National Institutesof Health. (2006). Marijuana. Retrieved February 5, 2009, from http://teens.drugabuse.gov/facts/facts%5fmj2.php

National Institutes of Health. (1997). Workshop on the medical utility of marijuana. Retrieved February 5, 2009, from http://www.nih.gov/news/medmarijuana/MedicalMarijuana.htm

National Organization for the Reform of Marijuana Laws. (2008). Retrieved February 5, 2009, from http://norml.org/index.cfm?Group%5fID=3376

Physician Assisted Suicide. (n.d.). Ethics in Medicine, University of Washington

School of Medicine. Retrieved October 15, 2008, from: http://depts.washington.edu/bioethx.pas.html

Pozar, G. (2005). Legal and ethical issues for health professionals. Sudbury, MA: Jones & Bartlett.

Scherer, Y., Jezewski, M., Graves, B., Wu, Y., & Bu, X. (2006). Advance directives and end-of-life decision making. Critical Care Nurse, 26, 30-40. Retrieved February 5, 2009 from EBSCO online database, Academic Search Complete. http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=21684278&site=ehost-live

Shimazono, Y. (2007). The state of the international organ trade: A provisional picture based on integration of available information. Bulletin of the World Health Organization, 85. Retrieved February 5, 2009, EBSCO online database, Academic Search Complete. http://search.ebscohost.com/login.aspx?direct=true&db=a9h&AN=27746664&site=ehost-live

Supiano, K. P. (2013). Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care. Omega: Journal of Death and Dying, 67(1/2), 201–206. Retrieved November 5, 2013 from EBSCO online database SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=88230751

U.S. Department of Health and Human Services. (n.d.). What can be donated. Retrieved February 5, 2009, from OrganDonor.gov. http://www.organdonor.gov/donation/what%5fdonate.htm

U.S. Department of Health and Human Services. (n.d.). Legislation and legislative history. Retrieved February 5, 2009, from OrganDonor.gov http://www.organdonor.gov/research/legislation.htm

U.S. Department of Health and Human Services. (n.d.). The Matching Process-The Waiting List. Retrieved February 5, 2009, from OrganDonor.gov http://www.organdonor.gov/transplantation/matching%5fprocess.htm#a1

Westerfeld, J. S., et al. (2013). Physician-assisted death and its relationship to the human services professions. Journal of Loss and Trauma, 18, 539–555. Retrieved November 5, 2013 from EBSCO online database SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=86689239

Suggested Reading

Baird, R., & Rosenhaum, S. (2001). The ethics of abortion: Pro-life vs. Pro-Choice. (3rd ed.). Amherst, NY: Prometheus.

Braun, K., Pietsch, J., & Blanchette, P. (Eds.), (1999). Cultural issues in end-of-life decision making. Thousand Oaks: CA: Sage.

Cherry, M. (2005). Kidneys for sale by owner. Georgetown, Washington, D.C.: Georgetown UP.

Csikai, E., & Chaitin, E. (2005). Ethics in end-of-life decisions in social work practice. Chicago, IL: Lyceum.

de Boer, M. E., et al. (2011). Advance directives for euthanasia in dementia: How do they affect resident care in Dutch nursing homes? Experience of physicians and relatives. Journal of the American Geriatrics Society, 59, 989–996. Retrieved November 5, 2013 from EBSCO online database SocINDEX with Full Text. http://search.ebscohost.com/login.aspx?direct=true&db=sih&AN=61214426

Holtkamp, S. (2001). Wrapped in mourning: The gift of life and donor family trauma. New York: Routledge.

Kleespies, P. (2003). Life and death decisions: Psychological and ethical considerations in end-of-life care. Washington, D.C.: American Psychological Association.

Kuebler, K., Heidrich, D., & Esper, P. (2006). Palliative and end-of-life care: Clincial guidelines. (2nd ed.). Philadelphia, PA: Mosby.

Muth, A. (1999). Death and dying sourcebook: Basic consumer health information about end-of-life care and related ethical and legal issues. Detroit, MI: Omnigraphics.

Taylor, J. (2005). Stakes and kidneys: Why markets in human body parts are morally imperative. Burlington, VT: Ashgate.