by Bill Beckman, Executive Director, Illinois Right to Life Committee
Editor's Note: This is the fifth in a series of columns first posted on the Illinois Right to Life Committee's (IRLC) website written by Bill Beckman, IRLC's executive director. The column discusses hospice care and gives individuals and families the tools they need to choose a good hospice care provider. This series warns readers about end of life issues and the need to monitor the care given to loved ones. The IRLC director also describes what readers can do to protect themselves from the looming culture of death which permeates the thinking of many medical facilities and health care providers in our nation.
The following was written by Bill Beckman
As I noted in my previous article, the correct answers on reducing or ending treatment of seriously ill patients are often difficult to come by and rarely made with complete confidence. When respect for life has been maintained, but a patient's prognosis is ultimately unfavorable, care requirements for the struggling patient may overwhelm family members. Hospice has been designed to provide relief to help patients live their last days as best as they are able without putting undue stress on loved ones.
As presented on the Hospice Foundation of America web site (http://www.hospicefoundation.org/hospiceinfo/), the principles of hospice state that "hospice care neither prolongs life nor hastens death," and that "the goal of hospice care is to improve the quality of a patient's last days by offering comfort and dignity."
In practice, is hospice true to these principles? Is the Hospice Foundation of America consistent with its stated principle not to hasten death? Have at least some hospices ignored the principle against hastening death and instead embraced such actions as "compassionate" and "ethical"?
IRLC has received a number of reports of concern about hospice care beginning in late 2004. Two nurses reported specifically that they witnessed how hospice care is used to quickly terminate the lives of patients through morphine overdoses. In April 2005, one of our board members attended a conference called “Ethical Dilemmas at the End of Life” sponsored by Hospice Foundation of America (HFA). The materials obtained from this conference express principles that seem inconsistent with the principles mentioned above that are visibly proclaimed on the HFA web site.
Some examples from conference materials include:
* The right to refuse life-sustaining medical treatment does not depend on the patient’s life expectancy or being “terminally ill.”
* Artificial nutrition and hydration is a medical treatment that legally may be withheld/withdrawn under the same conditions as any other form of medical treatment.
* Competent patients have a right to refuse medical treatment, even if that treatment is necessary to sustain life.
The implications of these principles suggest that in practice hospices have no problem with taking steps that hasten death. Under their definition of the term, medical treatments to sustain life include tube feeding, insulin for diabetics, kidney dialysis, and many more. Removal of these medical treatments will certainly hasten death.
Regarding tube feeding, an article from HFA on nutrition and hydration states, “There comes a time in some cases where even nutrition and hydration are considered extraordinary means of prolonging life, and such ordinary nutrients are discontinued. The decision to withhold food and/or fluids is made only when it is apparent to the caregivers and family that further prolongation of life would only extend discomfort.”
These statements apply to many more cases than those where the body begins to shut down and becomes increasingly unable to process nutrients. True medical justification for removal of nutrition only occurs when body systems are shutting down as death becomes truly imminent. Using a criterion “that further prolongation of life would only extend discomfort” is much broader in scope than circumstances where body systems are shutting down. This expansive willingness to deny nutrition and hydration is further confirmed when the article suggests “bio-ethical support for withholding nutrition in those persons with advanced illness whose greatly impaired quality of life would not be improved, but only prolonged.”
“Greatly impaired quality of life” is a subjective criterion that can easily be abused in arbitrarily deciding to deny food and water to patients who are not dying. Any hospice that follows the principles set forth by the Hospice Foundation of America is certainly willing to cooperate with or even encourage actions that hasten death through denial of food and water. They have clearly stated a standard of care that hastens death in their own literature.
HFA's push to hasten death gets worse. Among conference materials was a 350-page book published by Hospice Foundation of America, entitled Living With Grief: Ethical Dilemmas at the End of Life. Actions called ethical in this book are anything but ethical. Buried in the middle of the book, in a chapter extolling the ethics of assisted suicide, are statements that reveal the intent and means used by hospice to hasten death. Here is a telling sentence that summarizes the means used to hasten death: “It is well known that hastening death is practiced and approved in many ways in contemporary terminal care when suffering is extreme and irremediable – for example, by terminal sedation, by delivering pain relief sufficient to cause death by incidentally suppressing breathing, or by withdrawing nutrition and hydration. Given the obligation to relieve suffering, such practices are not incompatible with the physicians’ oaths.” (p. 192)
This quote appears in a chapter that encourages the use of physician-assisted suicide and praises Oregon for having a law to allow it. The chapter expresses the ethics of assisted suicide. The twisted thinking reflected in these so-called ethics is reflected in the following logic on why the physician is not responsible in any way for the death of the patient: “Assisting suicide does not involve killing others or taking steps that cause or hasten their deaths. Suicides kill themselves. Assistance involves such things as giving would-be suicides information about how to kill themselves, enabling them to secure the means of doing so, giving them realistic options, interacting with them as they choose among their options, assuring them that their choice will be respected, supporting them emotionally once they have decided, and protecting them from unwanted intervention. The would-be suicides themselves are entirely responsible for exercising the option and completing the act of killing themselves.”
If valid ethics have reached such a state, we need to inform the criminal courts that they can no longer prosecute the person who drove the bank robber to and from the bank that was robbed. The driver had nothing to do with the bank robbery. Clearly this example shows that what is being called ethical behavior to encourage patients to kill themselves does not pass the test of logic. Hospice Foundation of America puts its name squarely behind faulty logic to justify behavior that is not ethical at all. Their reference to these means to hasten death as “contemporary terminal care” warns us that these practices are also being used outside of hospice care. We might be in danger in hospitals and nursing homes as well, but HFA is willing to document such practices as ethical end-of-life care.
This is certainly not death with dignity! The author even uses the same false concepts of “choice” that we have heard for years to justify abortion. If you do not accept these actions as ethical, do not commit suicide yourself or assist someone else, but do not try to prevent others from exercising their “right to die.” They have the right to choose to end their life. The author even goes so far as to claim that not referring patients to others who would be willing to assist them would be unethical. That is what always happens when something truly unethical gets labeled as a right. Wrong becomes right and right becomes wrong!
Beyond HFA among hospice associations, the National Hospice and Palliative Care Organization (NHPCO) accepts the use of “terminal sedation” for some patients.1 "Terminal sedation is deliberately inducing and maintaining deep sleep but not deliberately causing death in very specific circumstances." Terminal sedation (also called total or palliative sedation) is a protocol actively promulgated by NHPCO. Howard M. Ducharme, chair of the philosophy department at the University of Akron, expresses serious concerns about the use of terminal sedation. He writes:
Terminal sedation (TS) is not limited to patients who are suffering from overwhelming physical pain from their terminal illness. TS is deemed appropriate for intractable or refractory suffering due to "overwhelming physical, emotional, or spiritual distress that is poorly relieved by other means."2 NHPCO advises, "There are many cases in which patients experience refractory spiritual or emotional pain, often referred to as existential suffering."3 TS is deemed appropriate treatment for existential distress "that is not relieved by counseling from social workers and chaplains, psychotropic medications, and other interdisciplinary interventions."4 Thus, the criteria for rendering a patient totally unconscious can come down to the individual's own report of the existential distress he or she feels. Those suffering from chronic depression or severe depression (e.g., parents who have lost their only child in a car accident) would qualify for TS.
When patients are put in an unconscious state through terminal sedation, they will not be given food and water by hospices that practice this protocol. Whether a feeding tube is removed or total sedation is used, the patients will die from starvation and dehydration. In what way is this approach not hastening death?
In summary, there is clear evidence that the hospice principle to avoid hastening death is seriously threatened. Whether the method used is a high dosage of painkillers such as morphine (justified as pain control), terminal sedation, denial of food and water, or a combination of these methods, the arguments to justify these actions are well established as "ethical" in the view of some medical ethicists. Next time, we will review some examples of how hospice care has failed to "improve the quality of a patient's last days by offering comfort and dignity."
1 Perry G. Fine, "Total Sedation: Management Issues," Total Sedation: Ethical Foundations and Pharmacotherapy Review, National Hospice and Palliative Care Organization, Telephone Seminar (June 14, 2001), p. 1. The NHPCO total sedation policy draft being available at this time (November 2001) is evaluated as the NHPCO TS policy in this article.
2 Ibid.
3 Jamie Goldstein-Shirley and Perry Fine, "Ethics of Total Sedation," Total Sedation Educational Resources Draft, Prepared by a Task Force of the NHPCO Ethics Committee (Session 8A, March 25, 2001), p. 3.
4 Ibid., p. 9.
The above column was first posted on RFFM.org in September of 2006.
Illinois Right to Life Committee's (IRLC) website http://www.illinoisrighttolife.org
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