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The NCCC Vision Statement
EXPLANATORY COMMENTS (September, 1997)
1. The Nebraska Coalition for Compassionate Care is a broad-based coalition of people and organizations affirming the right of every human being to live in dignity until natural death.
1.1 Re: right of every human being to live in dignity. In this paragraph, as well as elsewhere in the Vision Statement, mention is made of people's (notably patients' and health care providers') rights and dignity. In expressing ourselves thus, the Coalition appeals to what we believe are common and basic moral notions. Historically, a variety of philosophical accounts of these notions have been proposed.
The language of rights came into prominence in early modern times. The British philosopher John Locke—whose writings influenced our nation's Declaration of Independence and Constitution—took as fundamental the principle that human beings are born as free individuals. He also believed that to safeguard and regulate the freedom of each person, a social system of enforceable rights must be put in place. Locke's approach was later extended by Natural Rights thinkers, who championed such rights as those to freedom of religion, freedom of speech, freedom from government interference in private life, etc.
However, other philosophical traditions, some of them more ancient, some explicitly religious, and some stressing the community at least as much as the individual, also incorporate the notion of human rights. As used in this Vision Statement, the word "right" involves a recognition of these various traditions without implying a commitment to any particular one. In this, the Coalition follows other bodies representing broad constituencies, for example, the United Nations in its "Universal Declaration of Human Rights."
Similarly, in speaking of human "dignity" the Coalition appeals to another common notion which is grounded in different ways by different traditions. We hold that dignity is an inherent quality of each and every human being which must be respected by all humankind. Genuine respect involves reverence for the integrity and irreplaceable value of all persons—oneself and others. It does not allow the abandonment of one's fellow human being, but neither does it entail granting whatever a person desires or appears to desire, if the latter is contrary to human dignity.
We stress the human being's right to live in dignity because life is our most fundamental good, that without which we could not pursue—or claim a right to—any other goods.
1.2 Re: natural death. In referring to "natural death," the Coalition recognizes the appropriate but not strictly controlling place of the biological in human morality. As the scientific study of life, biology yields very significant contributions to our understanding of human nature and, indirectly, of morality. However, the particular sciences involve a reductive understanding of human life. Such reduction of the fullness of our being is necessary if they are to be successful; but we should not lose sight of the fact that these sciences, including biology and medicine, yield only partial insights into human nature and value. For example, biological laws which operate in the animal world, and to which human beings are subject as well, foster the survival of the fittest individuals and the corresponding demise of the weak so that the species may survive. Yet it is a moral obligation of human beings to bypass these biological tendencies and to assist our weak fellows and help them survive their infirmities.
At the same time, since we are part of the natural world we cannot deny or disregard our natural constitution. In particular, human beings are evidently mortal and no artificial manipulations will allow us to bypass this law of nature. Indeed, it would be a rejection of our humanness to attempt to deny this feature of our constitution and its inevitable force. Our moral worth and dignity are not juxtaposed to or superimposed on our natural constitution; on the contrary, our constitution is integral to our very being and as such inseparable from our worth and dignity.
Although life is a basic good, it is not an absolute good, to be maintained whatever the circumstances or costs. Thus, in some cases, not all that technically can be done needs to be or should be done.
In keeping with the above, the Coalition's reference to "natural death" acknowledges the human condition and the inevitable fact that each of us will face death, irrespective of technological attempts to postpone it. Although such attempts are ordinarily praiseworthy and may be morally required, they also may come to constitute an undue manipulation of our natural constitution. Likewise, of course, interventions designed to kill or artificially hasten death also violate the human person's natural constitution and, hence, his or her intrinsic moral worth and dignity.
2. We affirm a communal obligation to strive towards adequate health care for each person. Each person has the right to request and receive medical treatment and health care when sick, suffering, handicapped or otherwise in need of such care.
2.1 Re: a communal obligation. The Coalition affirms that a primary responsibility for caring for an individual's health lies with that individual himself or herself. However, we also affirm that human beings are social by nature, and that no one (whether strong or weak, favorably or unfavorably situated) can seek fulfillment in a condition of existential isolation. The social bond among persons entails obligations on the part of human communities—the global community of all human beings and various subsidiary communities according to their respective levels of organization—to care for all who partake in those communities, especially insofar as they are unable to care for themselves.
2.2 Re: adequate health care for each person¼in need of such care. As members of the human community, individual persons have (in addition to responsibilities) a right to care from their fellows. To care is to respond to needs and not merely to grant wishes. Indeed, no individual can claim an entitlement to the fulfillment of his or her wishes. But all can expect a caring response from their communities when they fall prey to illness, handicap, suffering, and other such hindrances to the fulfillment of life and participation in society.
Not every hindrance to fulfillment and participation can be remedied by the community. As noted above, human beings are mortal; thus there are physical limits to what can and should be done in an effort to restore people's health. Moreover, every community has economic limits, with the result that prioritization becomes necessary. Therefore, the meeting of some individual needs may have to be limited or postponed in view of more important or more urgent needs of others, or of the society at large. However, all communities should strive to enable their members to gain access to an adequate level of health care, consistent with individual needs and community resources.
3. We affirm and respect the right of patients to participate in decisions regarding their own care, whether expressed orally or in written advance directives.
3.1 Re: participate in decisions regarding their own care. The Coalition's affirmation of patients' rights to participate in decision-making stems from the principle that all human beings deserve a reverence for their personhood, which is always uniquely their own. Any coercion of human beings, even if it is for their presumed best interests, is morally troublesome in view of the personal respect that is owed them. Likewise, unconfirmed presuppositions about patients' views of their best interests are themselves morally troublesome because each human being is unique and has a moral claim to develop—within the overall bounds of respect for dignity and attention to one's concrete circumstances—a vision of his or her mission in life and the means to fulfilling it. Respect towards patients entails giving patients an effective voice in decisions regarding their health care. This involves not only refraining from coercion, but practicing attentive communication. Such communication includes adequately informing patients about treatment options and their likely results—including the option of no treatment. It also includes actively eliciting and taking seriously expressions of personal interests.
3.2 Re: advance directives. In the care context outlined above, an advance directive, although not strictly speaking an order to a physician, can be a very valuable guide and source of information. If a patient suffers reduced competency, so that genuine consent and communication itself are severely impaired or even impossible, care providers must rely on secondary sources to gain insight into that patient's interests and desires. Family and friends can be such a source, but their insights (like those of the physician) involve a degree of interpretation. The most reliable source—to the extent that it is clearly stated and covers the patient's current condition—is a type of advance directive, composed by the patient himself or herself, known as a "living will." Such a directive can be coupled with the assignment of decision-making responsibilities through a health care power of attorney.
4. We affirm the right of each person to refuse medical treatment when the burdens of treatment outweigh its benefits.
4.1 Re: the right of each person to refuse medical treatment. Because of the intrinsic dignity of human beings and their moral claim to develop visions of a personal mission in life, health care providers must in principle refrain from coercion. Even if a particular proposed intervention is objectively in the patient's best interests, this laudable end does not justify the use of coercive means. Just as a health care provider can refuse to provide treatment which he or she judges to be inappropriate, so also a competent patient has the right to refuse proposed therapies and to bear responsibility for the consequences of this decision. The health care provider acts morally when he or she foregoes treatment that has been refused by a competent patient, even if he or she believes that the patient should have accepted the treatment.
4.2 Re: when the burdens of treatment outweigh its benefits. Treatment decisions involve a consideration of burdens and benefits, the most important of which are those of the patient—rather than, for example, those of his or her family members or of society at large. Since it is the patient himself or herself who will enjoy these benefits and who must bear these burdens, in the weighing of such matters the patient not only is the primary criterion; supposing competence, he or she is the person in the primary position to judge. Treatments become extraordinary for a particular patient when, in his or her sincere and reflective judgment, the burdens are excessive or disproportionate to the benefits. No patient is legally or morally obligated to undergo such extraordinary medical interventions.
5. We affirm the right of every person with a chronic or terminal illness to pain management and to spiritual, emotional and social support. We call upon health care providers and the broader society to care compassionately for these patients so that they will not feel abandoned and isolated.
5.1 Re: right of every person¼to pain management. A primary and common aim of the health care professions is to reduce the suffering associated with illness and impending death. Such suffering often includes more than physical pain, but it does include physical pain as an important element. It has been reported in recent years that such pain is widely undertreated. Whether inadequate pain management is due to lack of expertise or other factors, it can, in almost every instance, be remedied by the knowledgeable and compassionate practitioner. Certainly, patients rightly expect their physicians and other caregivers to provide them with adequate treatment for physical pain, in order that their final life-stage may be relatively peaceful and conducive to preparing for death.
It is sometimes thought that, due to the effect of analgesic drugs on the central nervous system, the aggressive management of pain raises the risk of practitioners' liability—moral if not also legal—for their patients' deaths. Although the accurate assessment and treatment of pain is a complex matter, the physician who responsibly pursues these tasks need not worry about such liability. As long as a medical intervention is properly ordered to a therapeutic purpose, then even a foreseeable shortening of life which is incidental and unintended is not something for which the physician (or the patient who accepts the intervention) is properly responsible, either morally or legally. The same points would hold regarding side effects of the treatment of other physical complaints such as nausea and "air hunger."
5.2 Re: spiritual, emotional and social support. As important as it is, the management of physical pain is only part of the vision of compassionate care which inspires this Coalition. The communal obligation spoken of earlier to help our fellows avoid experiencing isolation entails a variety of other types of support. Family and other social relations must be maintained to the extent possible; indeed, these ideally provide a strong and basic level of support. However, sometimes such relations are missing or in bad repair; thus one important task for health care providers is to facilitate their development wherever possible. But since even in the ideal case the chronically ill or dying patient may have needs which outstrip the family's resources, health care teams must be prepared to offer further direct care.
Prominent among human needs are ones of an emotional and a spiritual nature, however they are experienced and expressed by the individual patient. It is important to everyone that his or her life has mattered, that it has had genuine meaning, that it can be summed up in a coherent story—perhaps one which is part of a larger, more ultimate story. And it is the common testimony of those who care for the dying that in helping patients to identify and claim such meaning there are reciprocal benefits for all concerned.
The Coalition is happy to note that in recent years there has been increased attention to the idea of holistic care, and in particular to the emotional and spiritual needs of the seriously ill. But the response to such needs cannot be the task of physicians, nurses and other primary health providers alone. Psychological and pastoral services must be integrated into the total provision of compassionate care. Not only are such services of intrinsic importance, they can reduce the felt need and call for the unacceptable practices discussed below. The implications, including financial implications, for health care institutions and the broader society must be honestly and courageously faced.
6. We find assisted suicide, euthanasia, and any other intentional shortening or termination of patients' lives incompatible with a practice of compassionate care. We call upon society to respect the calling of those health care providers who seek to treat and comfort the sick rather than aid in their death. We affirm the right of health care providers not to participate or assist in the intentional termination of patients' lives whether by referral, prescription, or intervention.
6.1 Re: assisted suicide, euthanasia, other intentional shortening or termination. Cloudiness and confusion often attend the use of the present terms. Thus it is important to have an accurate account of their meaning. A number of factors can be significant in judging these practices—for example, the patient's condition (whether or not terminal, reversible, beyond hope of recovery, etc.) and the agent's underlying motive (to end the patient's suffering, preserve the family's finances, free a facility's bed for patients with better prognoses, etc.). However, in the Coalition's view the crucially relevant factors are the nature of the act and the intention of the agent as these relate to the death of the patient.
Etymologically, the term "euthanasia" means "dying well" or "a good death." However, in standard usage it refers to an act (and at times, perhaps, an omission) by a physician or other health care provider which is directed to the patient's demise. Ordinarily, the agent in question has direct causal responsibility: he or she sets the death-producing events in motion, usually through the injection of a lethal drug, or a lethal dose of a drug. Moreover—unlike cases of accident or mistake—death is here the agent's intention: it is the immediate objective, what is meant to happen as a result of the act, even if it also is a means to some further end. The agent's motives, subjective wishes or ultimate ends may indeed affect an overall assessment of the act (or of the agent); but they are not to be confused with intentions as here described.
Can there be euthanasia by omission? It would seem that there can—or at any rate that there can be cases of omission which are the moral equivalent of euthanasia. Such happens when a decision not to intervene with life-prolonging measures is based on an intention that the patient should die. Many refer to these cases as ones of "passive" (as opposed to "active") euthanasia. The Coalition, however, does not favor this language because of the likelihood of confusion: the term "passive euthanasia" is sometimes applied to the superficially similar but fundamentally different type of case (discussed at 4.2) in which extraordinary treatments are foregone or discontinued. T he latter cases should not be classified as euthanasia at all.
Whether or not called euthanasia, another intentional shortening or termination of life should be mentioned. This is the case in which a patient is given morphine or other pain medication in such quantities as to bring about death either immediately or over a period of time—and in which a shortening or termination of the patient's life is the specific objective of the intervention. But this type of case also must be distinguished from a superficially similar one (discussed at 5.1): that in which the analgesics provided, in both their biochemical nature and their dosage, are properly ordered to the aim of reducing pain—even if a shortening of life or hastening of death is a foreseeable but unintended side effect.
Sometimes euthanasia and other intentional shortenings of life are divided into the "voluntary," the "non-voluntary" and the "involuntary." According to this usage, voluntary euthanasia occurs when the practice is requested by the patient. Non-voluntary euthanasia occurs when the practice is believed to respond to the patient's condition, but the patient (because of coma, dementia, or other disability) is unable to exercise competence and personal choice. Involuntary euthanasia would involve a case in which the patient receives death against his or her wishes.
The term "assisted suicide" is appropriately used when the primary agent is the patient himself or herself. A physician's or other caregiver's "assistance" can take various forms: e.g., referring a patient to a book by Derek Humphrey, building and making available a suicide machine, writing a prescription for lethal drugs, or personally handing a patient a cocktail of such drugs. As in the case of euthanasia there is in assisted suicide an intention that the patient's life be shortened or terminated—or at least there is a freely given concurrence with the patient's intention to that effect. Cases of assisted suicide can shade into ones of euthanasia, depending on the degree of involvement in the causation of death. Thus spoon-feeding a paraplegic patient the aforementioned lethal cocktail might count as euthanasia, as would injecting a lethal dose into a venous line.
One might imagine a health care provider objecting that merely referring a patient to sources of information, or to other, more willing providers, should not be regarded as assisting in suicide. But such a provider does play a causal role, and one essential point remains constant: were it not for his or her free act, intrinsically related to the objective of death, the patient would not have died at this time in this way.
In the Coalition's view, the above practices—assisted suicide, euthanasia, and other intentional shortening or termination of patients' lives—are incompatible with the ideals of compassionate care. For the proper aims of health care providers are to treat patients with a view to curing or ameliorating their conditions, and to comfort them through the management of pain and attention to psychological and spiritual needs. Since life is the most basic human good, without which there can be no other goods, acts objectively ordered to the patient's death—even if they were to be called "medical services"—could not contribute to either of the above aims. At best they might constitute misguided attempts at relief of suffering—misguided because the direct result of these acts would be that no one is there to experience relief! The ideals of compassionate care involve "suffering with" the patient and helping the patient to live as fully as his or her conditions allow—that is, as stated at the beginning, to live in dignity until natural death. These health care ideals cannot be pursued and in fact are contradicted by acts designed to bring about the patient's elimination.
6.2 Re: the right of health care providers not to participate or assist. Since in the Coalition's view the proper aims of compassionate care are the treatment and comforting of patients, no health care provider can legitimately be forced to take part in practices ordered to the demise of his or her patients. Even if euthanasia or assisted suicide were to become legal—something to which this Coalition is unalterably opposed—there would need to be enacted strong protection for the consciences of health care providers. For at stake then would be their chosen mission in life, and their personal rights and dignity. If society were to demand that physicians and others practice euthanasia or assist in suicides (even if "only" by referring patients to other, willing providers), it would de facto be forcing them to violate their personal consciences as well as the basic ideals of their professions.
NCCC Goals and Objectives
Goals:
- Create an environment in Nebraska in which all persons are aware of and have access to compassionate, comprehensive and quality end-of-life care, which includes addressing a person's physical, emotional, spiritual and social needs.
- Prevent the practice of euthanasia, "mercy-killing," physician-homicide, physician-assisted suicide and "aid-in-dying" through lethal injection, prescription of drug overdose or other lethal means.
Objectives:
Facilitate the assessment;and where needed, improvement of current end-of-life care and access to it;
Communicate to the citizens of Nebraska, through every available means, the existence of compassionate, comprehensive and quality end-of-life care;
Expand the membership of the Coalition to represent a broad and diverse spectrum of individuals and organizations;
Develop or support related legislation that is consistent with the goals and objectives of the Coalition;
Contest legislation or initiative petitions that advocate euthanasia through physician-homicide or physician-assisted suicide;
Commit to meet as needed to accomplish the Coalition's goals through these objectives.
NCCC Leadership: Advisory Board
Jon Bruening, State Attorney General
James W. Cabela
Sen. Merton "Cap" Dierks
Allen D. Dvorak, M.D.
Senator L. Patrick Engel
Donald E. Fischer, M.D.
Senator Chuck Hagel
Governor Mike Johanns
Senator E. Benjamin Nelson
Richard L. O'Brien, M.D.
Lloyd S. O'Holleran, M.D.
Governor Kay A. Orr
I.C. Plaza
Senator Donald Preister
Rev. Russ Sommerfeld
Operations Board
LaVon Crosby
Phil Essay, M.D.
Jennifer Eurek
Gayle Gengenbach
Kim Hall
Rose Hamilton
Jonathan Krutz, Exec. Director
Scott McPherson, M.D., DABFP
Vikki O'Hara, M.Div.
Greg Schleppenbach
LaDonna Van Engen, R.N.
Jos Welie, J.D., M.Med., J.D., Ph.D.
How to Become a NCCC Member
The Nebraska Coalition for Compassionate Care welcomes individual and organizational members. Membership contribution levels are indicated below. All members will receive the Coalition's quarterly newsletter, Compassionate Care Journal. To become a member, simply input the requested information below and a membership packet will be sent to you.
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Individual Membership
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Organizational Membership $_____ Member |
*NCCC is a tax exempt 501(c)(3) organization. Contributions to NCCC are tax deductible.
For a membership form, contact NCCC at (402) 477-0204.
