Monday, January 4, 2010
Catholic Directives on Artificial Nutrition and Hydration
In November of 2009, the United States Council of Catholic Bishops voted to approve and update the Ethical and Religious Directives for Catholic Health Care Services. Some of the wording changes have begun to worry some in health care about how to handle delicate discussions in Catholic health care facilities that may be caring for patients wishing to forego artificial nutrition and hydration. The most vocal group thus far is Compassion & Choices. The NHPCO, AAHPM and HPNA have been relatively silent on this matter either way to my knowledge.
The section on End of Life starts on page 29 and begins with an introduction reviewing Catholic teachings on matters pertaining to death in the modern medical age. From the intro:
While medically assisted nutrition and hydration are not morally obligatory in certain cases, these forms of basic care should in principle be provided to all patients who need them, including patients diagnosed as being in a “persistent vegetative state” (PVS), because even the most severely debilitated and helpless patient retains the full dignity of a human person and must receive ordinary and proportionate care.
Following the intro are the directives which I have highlighted a few pertaining to artificial hydration and nutrition.
58. In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally. This obligation extends to patients in chronic and presumably irreversible conditions (e.g., the “persistent vegetative state”) who can reasonably be expected to live indefinitely if given such care.40 Medically assisted nutrition and hydration become morally optional when they cannot reasonably be expected to prolong life or when they would be “excessively burdensome for the patient or [would] cause significant physical discomfort, for example resulting from complications in the use of the means employed.”41 For instance, as a patient draws close to inevitable death from an underlying progressive and fatal condition, certain measures to provide nutrition and hydration may become excessively burdensome and therefore not obligatory in light of their very limited ability to prolong life or provide comfort.
59. The free and informed judgment made by a competent adult patient concerning the use or withdrawal of life-sustaining procedures should always be respected and normally complied with, unless it is contrary to Catholic moral teaching.
The main revision comes in ERD #58 which changed the wording from "presumption in favor of providing nutrition and hydration to all patients" to "[moral] obligation" to provide food and water. other clarifying points was to highlight those in a chronic condition or the chance to live chronically with the assistance of artificial nutrition and hydration (ANH) cannot forego or refuse ANH in a Catholic Health Care Facility.
Most of the hub-bub has focused on patients in a persistent vegetative state, but since those cases are actually pretty rare, I think where this might be more likely to be a potential ethical conflict is in the care of patients after a stroke or those who become chronically critically ill. In those patient groups predicting death or the impending nature of death become much more difficult especially if you factor in the variable of +/- ANH. If you think having members of the church directly becoming involved in health care matters seems theoretical or indirect at best, consider the case of Mr. Welby in Italy in 2006, or Steven Becker in St. Louis in 2000.
The Catholic Health Association of the United States (CHA) issued a clarifying statement. And in other statements has said if a resolution could not be found, the patient would be transferred to another facility.
For more information on this you can read a good synopsis with interviews from Charles Stanley at Atlanta's The Sunday Paper. Also on the Compassion and Choices blog. And the San Francisco Examiner. Or from the blog otherspoon.
I would encourage anyone who does work with a Catholic hospital, nursing home or hospice to proactively address the handling of this directive so there is some clear understanding of the implications and the channels any decision making should go through. Maybe it is a good time to convene the ethics committee to review the directive and current practices regarding ANH. I do palliative care consults at a Catholic hospital so I know I will be meeting with the administration and ethics committee within the next few weeks to review this issue. If you have any experience with this please feel free to post in the comments or email me at ctsinclair@gmail.com.
8 Responses to “Catholic Directives on Artificial Nutrition and Hydration”
January 05, 2010
See also this general discussion of developments in Catholic ethics and end of life care in JPM by one of my colleagues: http://www.liebertonline.com/doi/abs/10.1089/jpm.2008.0162
Regardless of if one agrees with this or not (ie that provision of artifical nutrition and hydration are moral obligations in brain injured patients) there are two main challenges clinically with this. 1) I have already encountered the last couple years (ever since the papal alocution that set all this off) family members as well as clergy who have been told/interpreted this as that ANH have to be provided to all patients once they stop eating (which this clearly does not state - as far as I can tell what this really is saying is that if AHN is the difference between life and death, which it usually is in PVS then it is obligatory - but it isn't otherwise). That is, we have to address 'active' misconceptions about what this means. I don't really savor the role of telling patients that their priest is wrong (so I don't do it) about this even when I'm pretty sure he is misreprenting to them what the published doctrine states, so it becomes tricky, and one obviously relies on chaplains for assistance etc. I'm curious as to whether others have encountered this.
2) the second is the more straightforward act of helping patients/families understand when AHN won't prolong life or will worsen suffering as patients die. That is something we all help patients/families navigate frequently anyway.
January 05, 2010
Addressing active misconceptions about the Catholic Church's statements regarding ANH would be ideal but ultimately, I think we may need to trust Catholic clergy in its application and interpretation. Why? After reading the pope's statement a number of times and reading other articulate authors attempt to clarify it in peer-reviewed journals, I'm still utterly confused. Using the principle, if I'm confused and I have medical subspecialty training in these issues, I can certainly understand why family members and clergy might misconstrue this statement from the church.
I'd argue that the phrase
"euthanasia by omission" is the problem here. This is explosive language and the phrase is much like the term pornography -- it may exist, but words fail to define it. I'll go so far as to openly second guess the church for biting more than anyone could possibly chew by trying. The consequence of using this phrase and then failing in their herculean ambition to firmly define it seems to be that many clergy have reacted by becoming extra-ordinarily cautious in their approach. Naturally, hardly anyone wants to commit euthanasia. The end result is subjective interpretation, disagreement and controversy.
I don't know if I have any wisdom in handling this. I feel somewhat comfortable counseling family members to actively consult church leaders such as a priest when they are voicing decisions about ANH based on Catholic doctrine that sounds faulty to my ear. But, if a Catholic authority or chaplain offers an opinion, I leave it alone and respect it, because I have to trust that a priest or chaplain, who is closer to the Church teachings and doctrine, would do a better job of interpreting this than I ever could.
Personally, there are some cases in which withdrawal of life-sustaining treatment seems icky and perhaps the wrong thing to do. I just don't think we can reasonably expect a faith community to consistently and in uniformity define when this would be.
January 05, 2010
Reflecting on this a bit more, one thing we could do is offer to clarify any potential misconceptions about the patient's medical condition with the priest or chaplain. That is, of course, if we have the patient's consent to do so.
Beyond that, jeepers. Again, I think euthanasia is such inflexible language; it's illegal for Go..I mean goodness sake. So it's probably natural that church leaders to differ in its interpretation.
January 06, 2010
it is very easy for loud voices to condemn those who in their better judgment would advise against AHN, and then to disappear once their handiwork is done and be absent when the pt develops burdensome symptoms as a result of AHN, leaving the family, caregivers and the clinicians at the bedside holding the bag.
Essentially, my point is that American Catholics (I can say this b/c I am one of them) can be so full of hypocrisy and use their religion when it is convenient to do so. Look at how many US Catholics are divorced or have abortions (I am not opposed to a woman's right to choose, just using that as an example of how catholics routinely do not adhere to religious doctrine).
Pardon me for stepping onto my soapbox, I'll get off now.
January 06, 2010
Sean - I'm not sure that I find this very confusing. Agree that any 'euthanasia' language is distracting, to be polite. But the doctrine seems to be saying quite clearly that if AHN is necessary for life, regardless if that means in a deeply brain injured state like the PVS, it is obligatory. If it is not life prolonging (which it isn't for most of our patients) orexcessively burdensomne then it isn't obligatory. What excessively burdensome means isn't clearly specified and I think that's the way it should be. To try to specify that further would be a giant act of hubris (restraint by mitts ok, by being tied down not ok, etc.) and leaving that vague is realistic and completely appropriate. And, unless one believes that AHN, via some mechanism, substantially prolongs life in dying patients (which with a few exceptions I don't) this seems pretty clear to me, and from a clinical standpoint point no more complicated or ethically/emotionally fraught than the already difficult process many families go through as dying relatives stop eating/drinking much. The doctrine, by my reading, leaves the door wide open to individual interpretation and preference, especially when discussing burdens of AHN: that's a good thing. It even (after number 41 in the quoted text) acknowledges that it is ok to stop AHN at times when it's ability to prolong life is 'very limited.' I personally welcome that vague language - to think that we could talk about this with more specificity (4 days ok, 6 days not) is missing the point entirely, and the statement seems aware of that. The potential problem is people (patients/families/clergy) not knowing that that is part of the doctrine, as it's certainly not what is discussed in the media.
What is unequivocal about the doctrine is that it says patients with severe brain injuries (including patients in the PVS) have to have AHN as in those cases it's the difference between weeks of life and many months/years/decades and to me that's what's most interesting about the doctrine. It seems like a firm statement that when it's a matter of 'a lot' of time - questions of quality of life, the ability to hear/feel/see/interact, and a patient's personal convictions about how much invasive medical treatments they'd accept if they were in that state - don't matter. You must have a surgery/procedure, you must be medically fed, if the tube falls out, you must have it replaced: if it's a matter of a lot of time - no questions. Of course there is nothing in here about removing people from vents, which just highlights to me that this is very much about the 'exception' in medical ethics and decision-making about food/nutrition.
I agree, completely, that it's not our role (those of us who disagree with morally obligatory AHN) or right to debate this at the bedside and should respect and enact the wishes of families who feel it is important to not withhold AHN in brain injured patients - we all have done this anyway, even before this doctrine.
My concern is addressing the over-application of this and drawing the line between communicating about medical matters/advocating for what we feel is the most appropriate medical care and suggesting that you know more about the USCCB's directives than a priest.
And Anon, soapboxes are welcome here, so no worries.
January 07, 2010
I recently encountered a horrific experience - and I am not sure whether it was a Catholic NH, or one under fear of repercussion from the DOH.
I was asked to help advocate for patient who was clearly actively dying, who had a PEG, and who did not tolerate the feeds (he developed 3 episodes of aspiration pneumonia during the month receiving tube feeds and severe diarrhea). He was no longer able to communicate or participate in medical decision-making, and so his sister - who was his health care proxy and a social worker - asked that care focus on maximizing his dignity and comfort, and to stop the artificial feeding.
All was set. Everyone was on board, before I came.
The crux was that the nursing home where he came from, and where he was presumably returning to, called an ethics consult to address his care. They responded to the assessment by calling the patient's sister, who was grieving the accelerating decline of her brother's state of health, the sudden news of his pancreatic cancer. They told her that no matter what the healthcare proxy or sister said, no matter the believed wish of the patient, their institution would never let their residents suffer through starvation into death - a request they accused her of making. The case manager heard a similar rendition to the story from the nursing home's ethic's committee.
Needless to say, I wrote a blunt consult note, outlining the risks of continuing his tube feedings, based on his previous response, the evidence that overwhelmingly points to lack of efficacy of artificial feedings in dying patients, etc. He was accepted to another nursing home, known to provide superb end-of-life care.
The suffering this nursing home imposed on the patient's sister was horrific. Her strength was equally remarkable.
I hope, and indeed, I pray, that the language chosen in this updated catholic document does not further mislead more institutions down the road outlined above.
I hope that people read the document deeply enough - as Christian and Drew point out - to see that the Church clearly still will support a patient's wish (as defined by patient or healthcaare proxy) to withhold/withdraw artificial nutrition/hydration, or when it no longer provides extended life or comfort.
I also hope that patients have the opportunity to work with clinicians who will write - with clarity - the condition and prognosis of the patient, the risks and benefits (or lack thereof) of ANH.
February 07, 2010
I am usually in agreement with catholic doctrine and statements, although I wish their wording was easier to understand.
Joseph Bottum, a catholic thinker and editor of "First Things," writes with clarity, and is helpful in decoding catholic statements.
March 27, 2011
I am usually in agreement with catholic doctrine and statements, although I wish their wording was easier to understand.
Joseph Bottum, a catholic thinker and editor of "First Things," writes with clarity, and is helpful in decoding catholic statements.
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