Bioethike

A Cup of Cold Water? Surrogacy and Artificial Nutrition and Hydration from a Traditional Lutheran Perspective

Robert C. Baker

In partial fulfillment of MHE 603 Section 01 Health Law
Fall II, 2009

December 6, 2009

And whosoever shall give to drink unto one of these little ones a cup of cold water only in the name of a disciple, verily I say unto you, he shall in no wise lose his reward.
Matthew 10:42 KJV

The recent dramatic “second birth,” as he describes it, of Rom Houben, a Belgian misdiagnosed for 23 years as being in a persistent vegetative state (PVS), has reawakened concerns of patients, patients’ families, nurses, physicians, and lawmakers about the appropriateness of artificial nutrition and hydration (ANH) for patients lacking decisional capacity. Mr. Houben, whose brain has been newly diagnosed as near-normal, is now said to communicate with the help of a computer. Technology literally at his fingertips, he wants to write a book. (1)

Family members, friends, or church family members of traditional Lutheran Christians, (2) who have been diagnosed with PVS, coma, dementia, or other conditions impacting decisional capacity, might find a ray of hope in stories like that of Mr. Houben’s. (3) However, the truth is that such radical reversals in diagnosis are extremely rare. More often than not, health care surrogates are called upon to make what can amount to an important life-or-death decision: to begin, continue, or withdraw ANH for someone under their care.

Because surrogates of cognitive- or communicatively-impaired traditional Lutheran patients may encounter arguments for and against ANH by physicians, nurses, family members, and even clergy, it is important that they have a cursory understanding of basic cases involving the lack of decisional capacity, the impact of religion in making decisions regarding ANH, and the promise and the limitations of new technology for patients lacking decisional capacity. This essay will suggest that, armed with such information and apart from those circumstances in which ANH would contribute to prolonged patient suffering
or death, surrogates can find that ANH is consistent with a biblically-informed, traditional Lutheran ethic.

Important Background Cases

Surrogates may or may not be familiar with two highly-publicized cases involving PVS patients lacking decisional capacity: those of Karen Ann Quinlan (d. 1985) and Nancy Beth Cruzan (d. 1990). In separate legal cases, the parents of Quinlan and Cruzan, themselves acting as surrogates, petitioned the courts for the discontinuation of medical care: ventilation for the former, and ANH for the latter. Both cases were eventually successful, and medical care was withdrawn. (4, 5) Quinlan and Cruzan are are familiar to many physicians, nurses, and ethicists, who may advise a potential surrogate of  his or her option, absent an advance directive or other clear indication from the patient now lacking decisional capacity, to withdraw care such as ANH.

For many surrogates and health care providers, the still-controversial case of Terry Schindler Schiavo (d. 2005) may come to mind. At age 27, Schiavo collapsed from cardiac and respiratory arrest, suffered significant brain damage, and was eventually diagnosed with PVS. Although Schiavo’s husband, Michael, said in a 1992 malpractice suit that he would continue to care for Terry for the remainder of her life, in 1998 he initiated a separate suit to remove her feeding tube. The ensuing, highly-public seven-year battle with Terry’s parents, the Schindlers, ultimately ended with the tube being withdrawn. Schiavo died
March 31, 2005. (6)

The Principle of Autonomy

Behind such controversial cases is patient autonomy, the long-recognized principal in law, medicine, and ethics that patients have the right to choose whether to accept or to rejectmedical treatment. To preserve autonomy for patients lacking decisional capacity, courts have looked to the prior explicit wishes of the patient, the substituted judgment of the surrogate or, as a final resort, the patient’s best interests (Berger, 2008: 48). This means that, should a loved one become unable to make decisions for himself or herself, surrogates should make themselves aware of the patient’s prior written or verbal instructions, as well as his or her values or judgments regarding medical care.

Nevertheless, surrogates should also be aware that recent literature has found the autonomy model for decision making, prized by the judiciary and many medical ethicists, to be limited. Put simply, recent research suggests that patients do not value autonomy in the same way. Berger further suggests that

“A rigidly hierarchical view of surrogate decision making oversimplifies a process that is complex, dynamic, personal, and even idiosyncratic and tends to deemphasize other ethically valid considerations, including morally relevant emotions, and virtues, such as mutual responsibility.” (7)

This means that, while surrogate decision-making may be highly accurate (see Sulmasy, et. al. 1998), surrogates should recognize that their substitute judgments are far more complex than simply guessing what the patient would want. Given that advance directives cannot encompass every possible decision a surrogate may encounter, surrogates most likely will be called upon to access current recommendations from physicians, the advice of other family members and clergy, and other sources of information prior to making their decision.

The Affect of Religion on Surrogate Decision-making

Surrogates should also be aware that their own degree of religious adherence, as measured by frequency of religious service attendance, has been demonstrated to negatively impact their decision making. Sulmasy found that surrogates who frequented their houses of worship were more likely to ask for treatment for patients lacking decisional capacity, as measured against patient preferences. (8) He suggests that this tendency may be due to “religiously mediated feelings of compassion, altruism, or guilt; or [that surrogates] may be unable to ‘let go.’” (9)

This would seem to suggest that the faithfully-attending surrogates should seek to understand whether they are making decisions regarding ANH motivated simply by strong emotions masked by religious feeling. In their survey of relevant literature, Byron et. al. (2008: 432) found that nurses favoring the administration of ANH tend to be more religious. This could mean that surrogates might find a willing ear in the person or persons they may become closest to when the patient lacks decisional capacity. While emotions are normal are to be affirmed when appropriately expressed, both surrogates and health care providers
should aim at providing the best treatment options for the patient, and not simply satisfy their own religious/emotional needs.

The Promise and Limitations of Technology

It is certainly reasonable to expect that advances in medical and diagnostic technology will help us learn more about the complex conditions underlying decisional incapacity. It is most likely the case that Mr. Houben’s initial physicians made a diagnosis based on the best research of their day. With improved treatment protocols and better equipment, and with the aid of physicians, nurses, and other health care professionals, future surrogates may find it somewhat easier to decide in favor of ANH and other medical treatment for the cognitively or communicatively impaired. Patients, surrogates, and family members can be grateful for any advancement that might improve their loved one’s well-being.

That being said, there is another side to this technological coin. Functional magnetic resonance imaging (fMRI) can determine neural activity in the brain or spinal cord and thus open a pathway for the consideration of therapies for patients lacking decisional capacity. However, Wilkinson, et. al. (2008) suggest that fMRI imaging may may confirm to physicians and families that recovery is impossible or that by continuing any treatment, including ANH, constitutes futile care. (10). For the surrogate, this means that any additional information gleaned through fMRI or other diagnostic procedures in the future may make decision-making about ANH more burdensome.

Suggestions for Consideration

Surrogates who are asked to make decisions for traditional Lutheran Christians will want to understand important background cases, the principle of autonomy, the affect of religion on making decisions for others, and the promise and limitations of technology as part of their decision-making process and in order competently to effectively communicate with health care providers and others interested in a patient’s care. Here especially important is clear communication and partnership with nurses, who have a role to play not only in what procedures should or should not be performed, but how decisions should be
made in cases of decisional incapacity (Nolan, et. al., 2005: 8, Web version).

Helpful also is the advice of the Commission on Theology and Church Relations found in Christian Care at Life’s End (The Lutheran Church–Missouri Synod, 1993). Borrowing from and building upon moral and ethical thought from the Roman Catholic Church, (11) the Commission advocates for maintaining ANH except in those case in which ANH would lead to a decisionally-incapacitated patient’s worse health or death. Although ANH is a nominally-invasive procedure that can be of benefit to many patients, in some instances increased risk of site or blood infection, pneumonia, and edema preclude its use.

That being said, it is theologically consistent for the traditional Lutheran to be the beneficiary of basic medical care. Although individuals may express their own opinions or preferences, as a whole traditional Lutherans affirm the importance of case law, the principle of autonomy, the proper role of religious sentiment, and technology. Yet, because their hope is set on the life of the world to come, traditional Lutherans do not embrace a “life at all costs” ethic. That being said, they also recognize that in this life the Lord ministers to them through the caring hands of others. Thus, unless it causes them bodily harm, they accept a cup of cold water, whether from a paper cup or from a plastic tube.

Footnotes:

1) Hall, Alan. “‘I screamed, but there was nothing to hear’: Man trapped in 23-year ‘coma’ reveals horror of being unable to tell doctors he was conscious.” Mail Online.  HYPERLINK “http://www.dailymail.co.uk/news/worldnews/article-1230092/Rom-Houben-Patient-trapped-23-year-coma-conscious-along.html” http://www.dailymail.co.uk/news/worldnews/article-1230092/Rom-Houben-Patient-trapped-23-year-coma-conscious-along.html. (Accessed 12.04.09.)

2) Here I use the term “traditional” in the same sense as proposed by Engelhardt and Iltis. Traditional Lutheranism, like traditional Christianity, does not seek to preserve life at all costs, but finds spiritual value in repentance and faith, most especially at the end of life. Like traditional Christians, which include Roman Catholics, the Orthodox, and Anglicans, traditional Lutherans utilize the historic liturgy of the Church  with a special emphasis on the preaching of the Word and the administration of the Sacraments. See Engelhardt, H. Tristram, Jr. and Iltis, Ana Smith. End-of-life: The Traditional Christian View. The Lancet. 2005, September 17; 366(9490):1045-1049.

3) For an interesting tête-à-tête on the perceived application of this case, see Smith, Wesley J. The Long Awakening:  A Belgian Case Revives the Schiavo Decision. The Weekly Standard. 2009; December 14:15(13).  http://www.weeklystandard.com/Content/Public/Articles/000/000/017/305uwmcw.asp?pg=1. (accessed 12.07.09) and Caplan, Art. Apples, Oranges, and Comas.  http://blog.bioethics.net/2009/12/apples-oranges-and-comas-by-art-caplan/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+bioethics+%28blog.bioethics.net%29&utm_content=Google+Reader. (Accessed 12.07.09.)

4) In re Quinlan, 355 A2d 647 (NJ 1976).

5) Cruzan v. Director, Missouri Department of Health, 497 US 261 (1990).

6) Wikipedia: Terry Schiavo. http://en.wikipedia.org/wiki/Terry_Schiavo. (Accessed 12.07.09.)

7) Berger, Jeffery T., et. al. Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice. Annals of Internal Medicine. 2008; 149:51.

Sulmasy, Daniel P., et. al. The Accuracy of Substituted Judgments in Patients with Terminal Diagnoses. Annals of Internal Medicine. 1998; 128:625.

9) Id., 627.

10) Wilkinson, D. J., et. al. Functional Neuroimaging and Withdrawal of Life-sustaining Treatment from Vegetative Patients. Journal of Medical Ethics. 2008; 35:509-510.

11) For example, the Commission distinguishes “ordinary” from “extraordinary” care. Commission on Theology and Church Relations. Christian Care at Life’s End. (St. Louis: The Lutheran Church–Missouri Synod, 1993).

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Beauchamp, Tom L., Childress, James F. Principles of Biomedical Ethics. 4th ed.. New York: Oxford University Press, 2001) 170-181.

Berger, Jeffery T., et. al. Surrogate Decision Making: Reconciling Ethical Theory and Clinical Practice. Annals of Internal Medicine. 2008; 149:48-53.

Bostrom, Linus. Surrogates Have Not been Shown to Make Inaccurate Substituted Judgments. The Journal of Clinical Ethics. 2009, Fall; 20(3):266-273.

Bryon, E. et. al. Nurses’ Attitudes Towards Artificial Food or Fluid Administration in Patients with Dementia and in Terminally Il Patients: A Review of the Literature. Journal of Medical Ethics. 2008; 34:431-436.

Commission on Theology and Church Relations. Christian Care at Life’s End. (St. Louis: The Lutheran Church–Missouri Synod, 1993).

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