Saturday, June 20, 2009
Chest articles on miracles and spirituality/religion in health care
Chest recently published two articles about spirituality and religion in the care of hospitalized patients:
1) The first article discusses an approach to families who "expect miracles" in patients with very poor prognoses in the ICU. The author attempts to juggle the need to support surrogates' spiritual and emotional needs (as well as their substituted judgment) with the physician's obligation to avoid non-beneficial treatments when possible.
After a case presentation of an elderly woman who has multisystem organ failure, the author establishes a rudimentary differential diagnosis for the circumstance where a family brings up the possibility of a miracle. The differential listed includes:
- Hope/faith (trying to maintain a positive attitude in the face of an admittedly poor prognosis).
- Denial (due to lack of understanding about prognosis and/or reaching a different conclusion than the health care team about prognosis).
- Let's further parse out the "reaching a different conclusion about prognosis" etiology: This could be related to past family experience where the patient or another loved one made a seemingly miraculous recovery, but could also be related to mistrust of the health care team.
- A mechanism of control for family in the face of anger, disappointment, or frustration over some aspect of care.
Hopefully, in the process of an organized family meeting, emotions such as anger (and their root cause) will be identified and acknowledged in the process of eliciting family concerns, perhaps even 
before the family expresses hope for a miracle. I had not previously considered these emotions (directed at the care providers) to be a cause for a miracle statement. In fact, based on my observations in the ICU, families who seem to clearly understand the poor prognosis and who don't expect a miracle seem more likely to express anger about the potential of mismanagement, late diagnosis, etc. (In other words, "we know what's going on, it's awful, and right now we need someone or something to blame because it's so awful" regardless of actual fault.) This is by no means a general rule and not based on any research--I can certainly recall families who have expressed both anger and hope for a miracle. Furthermore, these negative emotions in general (even when not directed at anyone in particular) are a likely prompt for a miracle statement.
The initial inclination for many practitioners is to tackle the miracle statement on an intellectual level, refuting the possibility of a miracle. The author correctly recommends clinicians avoid this approach. As he states, this approach will only alienate families. Why? Besides being a generally adversarial approach, it does not deal with the emotions underpinning the miracle statement. Families expressing hope for miracles in dire circumstances are not making an intellectual argument to begin with. The author gives some good suggestions for responding to miracle statements. His recommendations include (with some examples and comments from me):
before the family expresses hope for a miracle. I had not previously considered these emotions (directed at the care providers) to be a cause for a miracle statement. In fact, based on my observations in the ICU, families who seem to clearly understand the poor prognosis and who don't expect a miracle seem more likely to express anger about the potential of mismanagement, late diagnosis, etc. (In other words, "we know what's going on, it's awful, and right now we need someone or something to blame because it's so awful" regardless of actual fault.) This is by no means a general rule and not based on any research--I can certainly recall families who have expressed both anger and hope for a miracle. Furthermore, these negative emotions in general (even when not directed at anyone in particular) are a likely prompt for a miracle statement.The initial inclination for many practitioners is to tackle the miracle statement on an intellectual level, refuting the possibility of a miracle. The author correctly recommends clinicians avoid this approach. As he states, this approach will only alienate families. Why? Besides being a generally adversarial approach, it does not deal with the emotions underpinning the miracle statement. Families expressing hope for miracles in dire circumstances are not making an intellectual argument to begin with. The author gives some good suggestions for responding to miracle statements. His recommendations include (with some examples and comments from me):
- Ask family what a miracle means to them (i.e. what it might look like).
- Emphasize non-abandonment (which speaks to yet another item in the differential--fear of abandonment if goals of care are shifted towards comfort).
- Reframe the manifestation of miracles (i.e."miracles come in all shapes and sizes"). Better yet, try to have the family reframe the manifestation of miracles (e.g. "While we all hope for the miracle of recovery, are there other miracles you hope for or have already witnessed?)
- Suggest that if a miracle occurs, the physicians will do nothing to prevent it. (Perhaps it's better to phrase this in a more positive light and combine it with the statement of non-abandonment, such as "We will continue to monitor your loved one very closely and reevaluate his situation on a regular basis. Should a miracle occur, we will certainly embrace it and see where it takes us." For example, reassuring a family member if a loved one miraculously "woke up" after a severe anoxic brain injury, the medical team would
certainly entertain changing the code status back to full code.) - Cite professional obligations to honor the patient's preference, or when that preference isn't clear, to act in the patient's best interest.
The article acknowledges some of these scenarios will lead to an impasse in decision-making. The suggestions provided should help to avoid this, but sometimes it's inevitable. A tincture of time can be helpful, too.
2) The second article is a general review of spirituality and religion in clinical care by Dr. Dan Sulmasy. It also addresses the issue of miracles both directly and tangentially:
Scientific medicine made it possible to reconcile belief in God as healer with the practice of medicine by physicians through an understanding of God as the inspiration and source for the physician's knowledge, and as the Creator of the world's healing resources, such as medicinal herbs (Sirach [Ben Sira] 38:1-15).
This brings me to perhaps the most intractable aspect (in some cases) of trying to allow for a family's hope for a miracle but at the same time not providing seemingly non-beneficial interventions. The discomfort of this dilemma is often elicited when a family member says something to the effect of, "I hear what you're saying doc. You don't think the treatment will work, but God gave you the knowledge and skills to heal my loved one. You do what you can, and God will be the judge of whether it's enough. If it's not enough, we'll have to deal with that."
In other words, the physician is part of the proposed "mechanism of action" of a miracle.
This is a challenge from a communication standpoint to say the least, and also potentially a spiritual challenge to the physician. Once again, the tendency of many might be to take this to an intellectual level in cases where there is a great deal of certainty that the prognosis is very poor. It's probably best to continue to consider this an empathic opportunity, and go through a reiteration of some of the suggestions above for responding to these statements. Another response to this statement may be to thank the family for their exalted view of physicians, and state hope that God also gives physicians the wisdom to help their loved one avoid unnecessary suffering. (A chaplain might be able to help families with this finer point.)
The rest of the second article is a decent review of the general topic of religion and spirituality. It includes an eloquent description of the difference between religion and spirituality:
The rest of the second article is a decent review of the general topic of religion and spirituality. It includes an eloquent description of the difference between religion and spirituality:
I define spirituality as the ways in which a person habitually conducts his or her life in relationship to the question of transcendence. A religion, by contrast, is a set of beliefs, texts, rituals, and other practices that a particular community shares regarding its relationship with the transcendent. Spirituality is thus simultaneously a broader concept than religion and a narrower concept than religion. It is broader in the sense that all religious and even nonreligious persons confront the question of transcendence, and so the term is compatible with all forms of religious belief and even the rejection of religion. Spirituality is narrower than religion, however, in the sense that, because only persons can engage questions of transcendence, each relationship with the transcendent will always be unique and spirituality ultimately personal. Even within a given religion, there will be as many spiritualities as there are individuals.
This seems intuitive but sometimes difficult to put into words for me (especially the part about spirituality being both a broader and narrower concept than religion) so I'll save this paragraph. In fact, both articles might be appropriate for the proverbial teaching file.
