Autonomy/"Rights" and Morality, continued (Ch. 13-15)

In this section, Lia is again admitted to the hospital with a high fever.  Despite her doctors’ efforts, nothing seems to help.  Lia’s parents take her home, opting instead for traditional Hmong rituals and herbs.  In their minds, since Western medicine has failed to produce immediate results, they ought to fall back on what they believe to be true- Hmong rituals.  Fadiman also discusses why the Hmong hold so strongly to their traditions and language.  The Hmong people have no country to call their own or geographical boundaries to define their homeland, so their language and traditions are paramount   To adopt another culture or language would mean a loss of identity.  Indeed, the Hmong came to American not out of choice, but out of desperation due to political turmoil.  The conditions under which they left their homeland further their steadfast commitment to their culture and language.  Despite Lia’s continued health problems, Fadiman notes that Foua and Nao Kao never see Lia as a burden.  Hmong parents rarely set their newborn children down, as Hmong culture values children very highly, and regards their care with the utmost respect. 

I’ve been thinking further about last week’s discussion of autonomy and morality.  Autonomy is an inadequate criterion for evaluating issues of morality because it accords with the ethics of autonomy, but not with morality as a whole.  Using autonomy as a moral criterion is insufficient because it fails to account for why people decide or should decide to stay alive.  If use autonomy as the highest moral criterion with respect to the issue of physician-assisted suicide, one would argue that once a person no longer desires to live, he/she has no reason to live.  Autonomy prevails, and a person’s choice to end his or her life to some degree categorizes that choice as moral.  If we uphold autonomy as the highest good in moral evaluation, we can categorize any choice that a person freely comes to as moral.  This is a pretty general statement, but I’m thinking about this in terms of patient autonomy now.  If a patient decides he or she wants to die, and the patient meets the criteria for socially acceptable physician-assisted suicide (such as having a terminal disease, being in pain, or being elderly), American medical culture tends to categorize this as moral.  However, it fails to address the possibility that life may be worth living out of obligation to the conditions under which it was granted: as a gift. 

Autonomy also fails to take into consideration that we live not only for ourselves, but also for each other, as our lives can find purpose in serving others.  I don’t say this to suggest that elderly patients on their deathbed should stay alive out of a sense of obligations to serve others.  I mean this to say that elderly patients on their deathbed can value their lives and themselves not only when they are productive members of society, but even when they are not.  Their lives are to be valued not only because of what they can do, but because they were created in the image and likeness of God.  They (and the rest of us) can recognize that their value lies not in what society deems it to be, but in Christ, or at least in something far more eternal than the world’s standards.  As a future physician, I can similarly value them simply because they were divinely created, and if they are Christian, respect them as fellow members of the Body of Christ.

The point of this whole spiel on autonomy in general and patient autonomy is not to denigrate patient autonomy.  Autonomy is how American medical culture respects a patient’s humanity and all the rights they are entitled to that stem from their humanity.  I’m suggesting that we look further, and recognize that autonomy is a means to an end, but not the end itself.  To regard people in this way, I think, respects their personhood in a much richer and fuller way than to simply respect their autonomy or utility.

Autonomy and Morality (Ch. 10-12)

In these chapters, Fadiman explains the importance of the Hmong connection to the earth, particularly the mountains.  The Hmong in China and Laos are also nomadic, a theme reflected in Hmong music and artwork.  Fadiman also discusses the Hmong’s history in foreign relations, noting that the Hmong support countries they feel will safeguard their autonomy as a people.  The insular and nomadic nature of their culture, she explains, is at the root of the centrality of autonomy in their culture.  As we have seen in previous chapters, the Hmong are indeed a very independent people, and were oftentimes weary of American medical professionals, regarding their intervention with resentment and dismissal.  While the Hmong conception of autonomy looks different from the American conception of autonomy, it is an important concept in both cultures.    

It is obviously very important for physicians to respect their patient’s cultural/religious beliefs and their autonomy, but I don’t think autonomy is an adequate criterion for evaluating an issue’s morality. For the rest of this blog post, I won’t be discussing patient autonomy, but autonomy in a general sense, and how it is used in moral evaluation.

American culture (and Western culture in general) value autonomy very highly.  I would dare say it is the value we uphold as the highest good.  Autonomy certainly ought to be respected.  Laws centering on respect for human rights are the primary way we seek to ensure that a person’s well-being is not threatened.  From the context of the Christian narrative, however, autonomy operates separately and above the realm of rights.  Christians are called to love God, but are also mutually obligated to one another, making love, not autonomy, the highest good.  As members of the body of Christ, we have claims on each other’s lives.  Being in a community requires that we both lift each other up and hold one another accountable.  Members of a Christian community are called not only to respect each other’s autonomy, but to go beyond this and help one another walk the path that Christ has set for us.  Rights and autonomy, it seems, are only a part of the greater picture of morality as a whole.  I mean this to say that in deciding whether a decision is moral, we must take factors besides autonomy into consideration.  Do we respect one another’s rights simply because to infringe upon them would be an affront to others’ autonomy? Or do we respect the rights of others because these rights serve to respect their humanity and a greater, fuller sense of morality?  The point I’m trying to make here is that “rights” are in service of morality, not the other way around.  Rights are important, but do not equate to morality.  Autonomy and respect for “rights” are not the litmus test for morality from the Christian perspective, precisely because Christians are called to live not only for themselves, but also for each other. 

Chapters 8-9: State Protection of Minors, American Medical Culture, and Hmong Culture

In these chapters, we see Lia taken away from her parents because they repeatedly failed to administer her seizure medication properly.  Lia is placed in a foster home temporarily but is later allowed to return home.  Lia’s case is rare, as children are generally not taken away from loving, non-abusive, attentive parents.  Lia’s parents tried to administer her medication as directed, but failed to do so either due to miscommunication or misunderstanding.  A CPS caseworker, committed to bringing Lia home, is the one responsible for Lia being reunited with her family.  The caseworker works with Lia’s parents regularly to address their cultural concerns and explains the medication’s administration clearly to them. 

Spirituality in the context of illness is also explored in this section.  The Hmong do not distinguish between mental and physical illness, so their approach to all illnesses is spiritual.  For example, in examining the etiology of a particular sickness, the Hmong identify a dab (malevolent spirit) as the cause, and would seek to sacrifice a dog to cure the spiritual illness, which cure the physical sickness.  Though western medicine ath the time dismisses the mind-body connection (though this is increasingly not the case today), the Hmong, in contrast, see no distinction between the two.  The body’s illnesses are caused by the spiritual, so it does not enter the Hmong consciousness to try and heal a physical ailment while neglecting a person’s spirituality. 

Lia’s separation from her parents is the culmination of the clash between American medical culture and Hmong culture.  Lia’s physician, acting out of his training from his American medical training and a sense of ethical obligation, decides the last option left is to have the state take Lia away from her parents.  Lia’s parents are mistrustful of American medicine and physicians, and are unable to partake in animal sacrifices to heal her as they would if they still lived in Laos.  Bound by American laws, they must work through American medical channels. 

Christian physicians in particular can likely understand the desire to respect a patient’s spirituality in treating them.  In this case, however, the patient’s parent’s spiritual beliefs fly in the face of conventional medical knowledge.  I don’t agree with Lia’s doctor’s decision to have her separated from her parents.  I did agree with the CPS caseworker’s insistent commitment to making her parents understand her medication and why it was so important to ensure that Lia took it properly.  Both the CPS caseworker and Lia’s physician believe they are advocates for Lia’s best interests: the caseworker to bring her back home to her family, and her physician for Lia’s proper medical care. 

The ethical question about the protection of minors takes a central role in this section.  Lia’s seizures are increasing in their frequency and severity, signs her physician believes are indicators of her eventual death.  Lia’s life hangs in the balance, yet the people who care about her cannot, despite their best efforts, seem to find a way to help her in the way that she needs.  Her parents do what they know how to do, sacrificing a cow in her honor and working with Lia’s physicians and caseworker.  However, it is simply not in their nature to fully trust western medicine.  They comply with the doctor’s orders primarily out of legal obligation, and instead place their faith in Hmong spirituality to heal Lia.  Lia’s physician tries to work with Hmong beliefs to get through to her parents and work alongside them to help Lia.  So far, though, the situation is not improving. 

It is frustrating and saddening to think that cultural and religious differences may be a causal factor in a child’s death.  Her medical condition is obviously the real cause, but the idea that her parents and her doctors are unable to come to a functional common ground to save her life is difficult to contend with.  I’ll be able to speak more on this topic as the story unfolds in the coming chapters.  For now, all I can say is that I see how incredibly important it is for physicians to understand their patient’s spirituality/culture, especially as it relates to their medical care.  In Lia’s case, as for many other patients, it could mean the difference between life and death.  Lia’s physicians are doing their best, but Lia needed more.  She needed the kind of physician who knows how to treat patients in a way that honors their bodies, their cultural backgrounds, their spirituality, and their humanity.