Thursday, January 17, 2008

The nature of spiritual care is.... ???

So, in working as a weekend on-call person, I have found myself returning again and again to this question. The chief chaplain for the hospice organization for which I work is not Christian, has a medical background, and has 4 units of CPE. His notions of appropriate scope of practice differ strongly from mine. For one thing, he uses "energy work" such as Healing Touch and Reiki, as part of chaplaincy, and I'm not even completely sure how I feel about that. For another, he believes in "distance Reiki," and I completely do not, unless you consider it no more than another language for "prayer," and that's an equation that I suspect he would reject--he believes in distance work as an actual "healing" technique. And I think his understanding of healing, and of spiritual distress, is quite different from mine. Not to mention the fact that when we disagree he tends to say, "As we learned in CPE..." as a veiled power move, given that he has 4 units and I have 1.

On the other hand, among the chaplains employed by our "umbrella organization," I have found that some, Christians from different traditions, see spiritual matters explicitly through the lenses of their own denominational choices, and I don't agree with them either, and in fact I worry about the patients who encounter these folks. An example being the fellow who reported, in a group discussion, that patients often ask him what happens after death and/or what heaven is like. I asked him how he responded to these patients. His response was completely taken from a set of Bible citations, and his justification for the response was that "he knows" this is the truth. Not, he believes, or he chooses to believe, but he KNOWS.

So I have been grappling with the term "spiritual care," attempting to relate what "seems right" in patient situations to some sort of theological underpinning, looking for ways to understand why I think I am giving "spiritual care," what I think "spiritual distress" is, etc. And I have mentioned, in the large discussion group of chaplains, that we use the term as if we all understood it identically, and I don't believe that is the case. Some agree with me and want to talk about it and others become defensive. But it's a loaded question, the question of what we do, and at some point we will have to talk about it.

One difference I have with the Buddhist chaplain, and with a Unitarian Universalist chaplain who just resigned, is that I have experienced both of them feeling that "spiritual distress" is a bad thing that should be "treated" somehow, by energy work or by blessings or prayers for peace. For me, spiritual distress is both more complex in its nature and more ambiguous in its role in the lives of persons nearing death and their families. Perhaps it is true that the desired state for each person at death is peace, but I seem to encounter people who have needs along the way, needs for reconciliation, for community, for rage, for being heard, for doubt, for all sorts of things that don't immediately translate to peace. Even people who present as "fine" can encounter rough patches along the way to death, ways in which what they have believed or not believed suddenly ceases to be useful and leaves them unsupported. I tend to think that some amount of spiritual distress is pretty normal for persons who are facing a terminal diagnosis and that much can be gained by working through it in some way--finding an alternate way to think about illness and punishment, for instance, or telling a trusted person something that has been a deeply held secret, or expressing a regret, or re-examining some crucial life events from a different perspective. I've seen people do all these things, with and without the help of chaplains. I prefer the "working through" approach to the "energy work" approach, and I'll admit that is my bias. I also have a much "lower anthropology" than do many Buddhist, Unitarian, or metaphysical folks. I don't think the essence of human nature is perfect, alas, and nothing in my life experience suggests that it is.

I'll also admit my biases against "cheap grace" and against the facile use of Christian prayer and scripture when these are undertaken without first listening to the patient's own language and experience. For myself, Christianity is the faith tradition that is "in my bones," so to speak, but for many of the patients, Christianity, while it may have been a piece of their upbringing, is not meaningful in their current construction of spiritual understanding. There is an art, at which I need to get better, of asking questions that allow the patient's own imagery and language to emerge, and I think that is crucial. I also think it is crucial to be clearly aware that religion is not in any sense neutral and that religious teaching has done incalculable harm to incalculable numbers of people. Thus I have no feeling of automatic relief or optimism upon hearing that someone is a member of a church or denomination. That might be helpful for them, but might not be. It does not absolve the chaplain of the need to be aware of the potential for harm.

Anyhow, this is all getting too "heady." I'll close by saying that I pray with patients in less than 50% of chaplain contacts, which horrifies some, and my next post will discuss why I think helping the CNA prepare a body for the mortuary can be valid spiritual care.

If you've read this far, go look at Confessions of a CF Husband and offer the family some encouragement. I'm not in alignment with them politically and my spirituality is very different from theirs, but this young couple has a strong sense of call from God and are following that call despite tremendous personal hardship, and that is something to be respected.

Thursday, January 03, 2008

Late night emergency call

The call came late on a Sunday evening; I'm on call until Monday morning, so I assured the nurse I would indeed come in. A new patient was being admitted to the care facility where I work, as an emergency, impending death, and was accompanied by a family with high needs. I took report from the nurse who brought the patient in, who told me the patient had been in home hospice care and taken a terrible turn for the worse. The white middle-class family was completely undone, the nurse said, and it's not surprising given the suddenness of the change.

I found the family with the patient, all of them in hysterics (except the patient who was barely responsive and fighting for air). Listening for just a few minutes I realized that the death of this family member represented, for the family, a loss simply impossible to contemplate. YOU CAN'T DIE, they kept screaming at the patient. And I do mean screaming. The rooms are kind of soundproofed at the facility, but if the door was cracked you could hear them down the hall.

Four hours of struggle--the family fought every medical intervention on the part of nursing staff. At one point the patient's partner said to me, I knew you all would just drug her up so she can't even talk to us. And then, to the patient, WAKE UP, TALK TO ME!! In vain I tried to explain that the patient's disease was the reason for her inability to speak. We could have withdrawn all medication and with no oxygen getting to organs or brain, conversation was just not going to happen. There is, as a friend tells me often, a reason why they call it respiratory FAILURE.

The family did permit the nurses to give medicine for comfort, but every dose was a fight. The family believed the medicine was killing the patient, despite teaching from nursing staff and from me. And the family--partner and grown kids--remained resolutely hysterical, out of control, inconsolable. They could not leave the patient alone, but kept climbing on the bed, grabbing hands and arms, grabbing her head, her face, pulling at her, trying to get her to respond. The partner was the "gatekeeper" for the bunch but was so out of control that it was impossible to reason or even comfort. All interventions apparently felt like confrontations and escalated the wailing and screaming. In brief moments one or more of the adult children appeared to comprehend that the patient's death was inevitable, but they were not able to move out of hysteria and consider the patient's needs at all. Everytime I or the nurse entered the room we were met with openly hostile stares. We knew they were angry at the situation--the illness and death of their loved one--and we were easy to blame because we were there.

Who knows what earlier traumas had destroyed this family's coping skills. I don't know anything about them, though I wonder if the patient was perhaps the only grounded or pragmatic one, and without that voice, the family became like a solar system whose sun has mysteriously vanished, flung suddenly without gravity into the terror of deep space.

It was not a peaceful death. The patient's partner was lying atop the patient screaming, YOU PROMISED YOU'D GET WELL. The adult children surrounded the bed, sobbing, choking, wailing, DON'T DIE, YOU CAN'T LEAVE US!!! Not a comfortable way to leave this world.

The drama didn't stop with death; the family ripped all the medical devices off the patient before the coroner had released the body (luckily the coroner DID release, it would have been very messy indeed had the death been a coroner's case). After a couple of hours with their loved one, the family members were all cried out. Only then was I able to speak to the partner, to say how sorry I was for his loss, to say that I knew that all they wanted was for their loved one to get well, and how sorry I was that we could not offer them that solution.

I learned the next day that the patient had had cancer for three years and it had spread widely. But in that time there'd been no estate or funeral planning. The family just simply could not entertain this person's death as a possibility. It was not going to happen, not now, not ever. For whatever reason, the death seemed so horrible that it could not even be thought of. This was the unsurvivable loss, the event feared above anything. I have seen other families who have defined/experienced a particular loss as unsurvivable, and the consequences reach through generations. One family had experienced a divorce after a husband and father left. This impacted them so badly that fear of abandonment echoed on down, especially, among the women of the family, fears of abandonment by a man. It was almost encoded in the DNA: one does not survive abandonment. So I fear for the partner and children of our patient who died that Sunday evening. I hope somewhere they find a way to regroup and survive.

But what a failure I felt. There was simply nothing I could think of to bring peace or calm to that room. I wonder now what would have happened if I had simply been blunt, simply said, "Look, she is going to die, and she's going to die tonight. You have a decision to make: what do you want her last experience of you to be????" I don't know--that might have helped them focus. Or, it might have escalated them into physical confrontation with staff--they might have insisted on removing the patient to hospital for resuscitation, against the patient's wishes. I just don't know. Tomorrow I'll be visiting with my very-experienced chaplain boss, and I will ask him. At least, examining my feelings, I had a glimpse of what the family felt: helpless and angry. However, my one advantage was that if life has taught me anything it is that the unimaginable, the worst, can and does happen, so I was able to stay out of their panic and determination that their loved one not die. Staff said it helped THEM to have me on the floor throughout the struggle and willing to stay in the room with the screaming. So that's something, but wow.

What a night!!!