The Good Death

Who Controls the Quality of Death? 

Copyright Michael C. McLain

Abstract 

            The short title of this paper called ‘The Good Death,’ is the direct translation of  the Greek word euthanasia. With increased longevity, issues of suffering from chronic illness have given rise to fears of a slow and painful death. Patients are looking to their health care providers for reassurance they will not suffer and in some instances asking for help to die. This paper is an historical research project of a non-experimental design covering religion, government, physicians, and the patient and family, to review their influences and determine who ultimately is in control of the act of dying. 

Who Controls the Quality of Death? 

Expressing his view on the subject of death in an essay, Sir Francis Bacon has been quoted as saying, “Men do not fear death so much as they fear the act of dying” (Webster,1973-1974).  Written in the mid 1600’s, this quote is as relevant today as it was then. Current census figure projections show the number of Americans over the age of 65 will double by the year 2050. These Americans more commonly known as ‘Baby Boomers’ are looking for reassurance that they will have a ‘good death.’

            Americans have always enjoyed their independence and expectations of excellence in their medical care. This medical excellence has them becoming more alarmed daily as physicians become ever more capable of prolonging life through new technology. People are coming to realize that this very technology might be their worst enemy when it comes to quality of life versus quantity of life. They fear a long projected death with no control over the way they die. This fear of the act of dying is not new, as early as 65 AD, Roman senator and philosopher Seneca is quoted as saying:  “ Just as I select my ship when I go on a voyage, or my house when I propose to buy a Residence, so shall I choose my death when I am about to depart from life” (Webster, 1973-1974).

The consensus of a great number of people reflect this view, and they are demanding a right to choose how they will die. Patients are turning to their  doctors/health care providers and asking for their assistance in ending their lives, when faced  with terminal illness. 

            Many interest groups seek to have control over death in America. The intent of this paper is to research the following groups, religious, governmental, physician, and the patient/family, and determine who has control of a good death in America.

 Religious Control

             If the decision for Physician assisted suicide (PAS) were to be based upon the precepts of the major religions; than the Christian-Judeo sectors would strongly object to any form of suicide. Members of the Christian church argue that the bible considers suicide a wrongful, unlawful act, yet, a careful review of the bible passages finds only a reference to the unlawful killing of others (Kavaney, 1997). The passages relating to Sampson, Saul, and Judas, who all committed suicide do not show condemnation for their acts. Actually, the Christian church took up a stance against suicide in the forth century A.D. , when St. Augustine encouraged the adoption of the tenet that suicide was a mortal sin. The reason that this was felt necessary was that droves of Christians were committing suicide in an effort to achieve the status of martyrdom, which was putting off efforts to convert new members to the church! More recently, Pope John Paul ll has issued an encyclical, “Evangelium Vitae,” which is the equalivent of his speaking in God’s behalf stating that assisted suicide and euthanasia arealways impermissible (Stanley, 1997).           

            The act of suicide, no matter the reason, is not justified by any of the major religions of the world. Most religions do not deny the patient’s right to appropriate treatment for those in the process of dying with intractable pain, as long as the intent is to manage the pain and not kill the patient. The only exception to this rule is the Christian Science Church, which does not allow medical intervention at all regardless of the circumstances. 

Government Control 

            The issue of a good death has all fifty state governments, the federal government, and state and federal court systems debating the issue. Oregon was the first state to grapple  with the decision and passed the ‘Death with Dignity Act’ in 1994. This act allowed physicians to prescribe and instruct their patients in the use of drugs that would allow the patient to end his/her own life. This is called passive assistance, the physician is not present, nor does he actually physically administer the medication. The act was immediately challenged in court. The 9^th U.S. Circuit Court of Appeals rejected the lawsuit to over throw the act. The three judge panel responded that “ those challenging the law could not demonstrate that they face imminent threat of harm” (Kalmeyer, 1997). 

The Supreme Court handed down a decision that left the matter to the individual states to decide (Goldstein, 1997).  In 1996, over a thirty day period, two federal courts of appeals came to important decisions. Both courts held as unconstitutional, state prohibitions against aiding and abetting suicide when those laws were applied to physicians prescribing lethal doses of medication for use by their competent terminally ill patient (Kaveny, 1997). Active euthanasia remains illegal in every state, while assisted euthanasia is banned by statute or through court interpretations in 47 states. 

            President Clinton signed into law the prohibition of the use of federal funds to pay for assisted suicide (Smith, 1997). Mr. Clinton’s personal view is that suicide is not something the federal government should sanction. It would appear likely that he would be willing to sign into law a bill which has recently passed the House of Representatives and is currently in the Senate. Known as the Lethal Drug Abuse Prohibition Act, this act has the potential to affect the physician’s ability to order schedule two drugs for their patients with intractable pain. The focus is to prevent doctors from using these drugs to end a patient’s suffering if the use might cause the patient to die. If the patient died the physician could be held responsible for the terminally ill patient’s untimely death. The physician could be prosecuted. The bill also provides for the “revocation of the physician’s DEA registration, if clear and convincing evidence showed the doctor had prescribed, or dispensed drugs, to assist a patient to commit suicide”(CQ Weekly, 1998). This law would override the Oregon Death with Dignity Act if passed.          

            All states have passed some form of Advanced Directive laws, more commonly known as living wills, and the federal government has provided the Patient Self Determination Act, which became law in 1991. This act requires all federally certified health care facilities notify adult patients of their right to accept or refuse medical treatment. These facilities must also inform the patients of their right to Advance Directives (Beauchamp, 1999).

            Advance Directives gives the patient the right to direct some aspects of their care. It provides the physician and the patient’s family with the patient’s desires when it comes to advanced life support and extraordinary care. It provides the physician with guidelines as to when to invoke the directive.

            The ‘Right to Refusal’ and ‘Advanced Directives,’ open up communication between the patient, physician and the patient’s family. It places the responsibility on the patient to make his/her views known in writing to the physician, and hopefully to their families as well. 

Doctors’ Control

 

            Physician opinions on euthanasia vary greatly. When polled, many doctors reported that they had been asked by their patients for assistance in ending their lives. Some admitted that they had helped their patients on one or more occasions. The decision to assist was based upon the individual case. While the individual physicians polled gave various responses (Southern Medical Journal, 1998) the national American Medical Association (A.M.A), through their Chairman, Thomas Reardon, made the view of the A.M.A. known, “If we meet our patient’s needs, we do not think there would be interest in assisted suicide. PAS defiles the Hippocratic Oath which requires physicians ‘ to do no further harm’ ” (Goldstein, 1997). 

            In 1998, the federal government did a survey of medical education institutions. The focus of the survey was to discover what training physicians received in palliative care and pain control. Results showed that physicians receive very little training in these areas and in most cases are ill prepared to provide the support needed for their terminally ill patients, especially those suffering from intractable pain. “ The study showed that only half of the 7,787 specialties and sub specialty residency programs educate students in end of life care. Some schools offered it as an elective, and some did not offer it at all. Close to half of the schools reported a need to include clinical training in pain management for chronic and terminally ill patients (GAO, 1998). Thomas Reardon of the A.M.A. could have a strong point, given this study’s results.

            Historically, physicians have always strongly objected to any governmental intrusion into what they hold to be the sanctity of the physician/patient relationship. The Lethal Drug Abuse Prevention Act if passed will have some effect on the use of pain control medicines for the chronic and terminally ill. It is doubtful however, that it would stop physicians from assisting their patients. The physician is responsible for filling out the cause of death on a death certificate. It is doubtful any physician would volunteer to write ‘physician assisted death related to prescribed drug overdose! 

            Perhaps Faye Girsh, the director of the Hemlock Society said it best, “ We know that doctors have helped people to die, probably since the beginning of the doctor patient relationship, we have no doubt this will continue” (Goldstein, 1997). What is known is that any decision a physician makes will come from his own personal views. Goldstein (1997) states: “It is likely that physicians who treat terminally ill patients will  continue to be left largely to their own distinctions, to heed the law or not, to deter patients from suicide or not, to urge patients to prolong treatment or encourage them to decide when enough is enough.”

Patient and Family Control

            Dying is not just a medical experience for the patient and their family. The terminally ill patient is not just concerned about pain control. Miller (1999) states in his article “Death by Design,” “ they are also concerned about becoming a financial as well as a physical burden upon their families. They want to be reassured that the dying process will not be prolonged.”. Birenbaum (1992) reported similar concerns in an earlier article, citing that approximately “ two-thirds of all health care costs come about during the last two to three months of life.” He also reports that close to one third of American families experience a significant loss of income and savings. Private insurance carriers do not provide adequate coverage for nursing home or hospice care. This often leaves the burden of care to family members, who are ill equipped to manage. Ironically, in Oregon, site of the only Death with Dignity Act in the United States, the state government and state insurers including HMO’s are all willing to cover the costs of lethal drug prescriptions 100%, but only cover a small portion of the costs of nursing home or hospice care. 

            Terminally ill patients have expressed concerns over loss of dignity, loss of control and becoming dependent; some reported feeling sad, anxious, irritable, or depressed. The article,  “Promise of a Good Death,” a study on the terminally ill, found that providing relief for these symptoms, Through the use of appropriate support systems such as hospice care,  psychological and religious support, as well as medications, given for the treatment of pain nd depression reduced the desire for a terminally ill patient to request assistance in dying as long as the patient remained reasonably comfortable (E. L. Emmanuel, 1998). 

Conclusion

            Based upon the literature, it can be concluded that Advanced Directives and the Right To Refuse Treatment Acts, are currently the only recognized controls most American patients    have over the quantity and quality of their terminal time, the exception being Oregonians. The Advanced Directive and the Right to Refusal of Treatment, is not a guarantee of a good death. In some instances these requests have and are being ignored, for instance emergency treatment given by paramedics, and EMTs often require by state law, that the directives be ignored. Currently some states are now revising these laws to fall into line with the patient’s Advanced Directives.

            The patient who has not made his views on advanced care known and is considered unable to make such a decision, either due to mental or physical incapacity, will continue to be dependent upon their family members and their physician to make decisions regarding their terminal treatment. The burden to stop treatments or to give extraordinary care can be emotionally overwhelming for family members.

            It is the physician, who either encourages or discourages further treatment, or the continuation of treatment. It is the physician’s knowledge and expertise in the management of chronic and terminal palliative care and pain control, which will determine the level of comfort and comforting the patient and their family experiences. It is the physician whose own religious, moral and ethical views will influence his decision to follow or break religious tenets and governmental laws. It is the physician who remains in control of the patient’s ability to have a good death.

 Table 1

Census Projections

Appendix A

Opinion Poll

Appendix B

Opinion Poll

Appendix C

Opinion poll

Right of terminally ill to take their own lives

Breakdown by age, race, sex 1977-1994 total sample

Appendix D

Opinion Poll

Percent agreeing ill individuals have a right to take their own lives

Breakdown by birth cohort and year

References