Wednesday, August 21, 2019
Rules are rules
But she was also a private person. Not given to announcing her needs, and always concerned that she not "be a bother." So when her terminal illness came, and hospice was called, the parish office was never officially notified. The right paper it seems was not filled out.
We were never invited to hospice team meetings. We never took part in her spiritual assessment. Our clergy or lay Eucharistic visitors were never a part of the care plan. We were not included in any call tree for when she would finally meet death.
Oh, we knew... this time. Bits and pieces. Here and there.
Her friends called my cell phone or stopped me after church or even came to the office, but whenever I called the house, her son promised me that he would let his mother know we called and were interested. We sent cards, altar flowers, along with the regular church communications. Our pastoral care team planned for her care, and a lay pastoral visitor would visit from time to time-- but it was chancy. She was a low-church kind of Episcopalian, so regular communion at home was not in her spectrum of observance. The counters tell me that her offering would arrive by mail like clockwork. But since a card or a note were attached to any of these, I am thinking that someone handling her affair took care of the offering, along with her other bills.
People in the parish would ask me how she was doing. After a while I would have to say, something like "I hear that she's in hospice, but I really don't know."
That's because Hospice was of no help. At all.
They were of zero help in allowing us to our part in the end of life care of their patient.
Twice I called the Hospice Nurse. Once I got through, on the second try. I don't know if the nice person who answered the phone passed along the message the first time, but she called me back on the second try.
I asked to meet with the Spiritual Care Coordinator, who is (I suppose) their chaplain. I have no idea of the person's credentials or training, but it doesn't matter. He or she never called me back.
I told the Hospice Nurse that I was the person's priest. That the patient had been a part of this parish for over sixty years and attended Sunday Eucharist every week. I told her that I would, first, like to visit the patient and second, would like to work with the Hospice on providing the spiritual care for their patient. I said I would make time to come to team meetings or meet with the social worker, nurse, or spiritual care coordinator at their convenience. I told that I knew that I was a "guest" in their system and emphasized that I was at their disposal. I was told that she would bring this to the Care Coordinator and to the patient's son and they would get back to me.
After a week. I called back. Left a message. No response.
I decided to take a crack at just showing up, and alas, I came at a time when the patient was sleeping (or "resting" I was told). I left a card. I asked the uniformed caregiver to please let the patient know I came and that I would like to come by.
Still more crickets.
A third time, I called and asked to be a guest at the Hospice team meeting. I told them that not only was I the person's priest, but that I was at one time a Hospice Chaplain, the member of a Palliative Care Team, worked on a state-wide bio-ethics panel, and was a Board Certified Chaplain.
The choir of crickets persisted.
Three days ago, the patient-- our parishioner-- died. A little detective work led us to the funeral home handling the arrangements. I know the funeral directors there, and have a great working relationship with them. They are professional, caring, and skillful at handling all the nuances of closing out our mortal lives, including the spiritual and pastoral issues. After a brief conversation where not much formal information was shared (but between us much was communicated), I can see where this is going.
Our long-time parishioner, with a lifetime of connection, story, service, and worship, will probably not be buried out of the parish and it is up in the air as to whether or not her pastor will even be invited to preside.
What's worse, is that a community (this parish community, and God knows how many of her community of friends) will be left to work out their grief solo, in the dark. The curtain of another life quietly drawn to a close with little or no comment or recognition.
And the place where she came to give her living meaning, hope, purpose, comfort, and direction, will have no opportunity to listen to their stories, share our story with those she loved, and her Gospel story will be will be left un-said at least in the context of a funeral.
Part of this is completely in keeping with our member's way of being. She was a quiet person, unfailingly polite, who never wanted to be a bother to anyone. I think that the idea of anyone making a fuss over her would seem mortifying. Still, I remember the Prayer Book she brought to church every week. Not only was it hers, but it was filled with old bulletins, pages torn out of the Anglican Digest with some prayer or meditation that meant something to her, prayer cards and Mass cards from other funerals, the ever present copy of this quarters Forward Day-by-Day behind the inside front cover. When I told her how to preserve the ribbons with dabs of clear nail polish, she told me of her sure-fire method of getting wrinkles out of purificators from her altar guild days.
So the sound of all those crickets at the end felt particularly painful and sad to me.
And, I'm betting dollars to little round doughnuts, that the spiritual care was being left to the wishes, whims, and biases of the primary care giver, who (as luck would have it) was estranged from anything spiritual let alone religious.
Imagine having a Jewish patient being ministered to by Catholic priest or a Scientologist because that was the affiliation of the primary care nurse or the relative of the patient doing the care. Imagine if the doctor decided that only Mormons or Methodists would be allowed into the patient room. That would be wrong, right? Well, I think that was what was happening here. And not maliciously, but because no one was skilled enough to a proper pastoral and spiritual assessment.
Usually, in my experience, the whole range of the ways people frame their meaning and spiritual life is boiled down to two questions: "Do you have a church?" and "Do you want to call your priest/pastor/rabbi/imam right now?" Two questions designed to elicit a range of unpacked feelings and no action.
Which is why I had this awful feeling that big part of this person's end-of-life care was being left out.
A big chunk of this, though, is my fault. Not in the actions of me or this parish in the months and weeks leading up to her death.. We did all we could and then some to care for our sister in Christ. No, it's my fault because a long time ago I was apart of a committee that helped create rules to formally protect a patient's privacy when they are in the healthcare system. In the 1990's, there was this big inter-disciplinary committee meeting in Washington, DC, called together to form rules and regulations regarding patient privacy and confidentiality. I was there. Among the handful of pastoral caregivers in the group.
We were not a united voice, though. One person wanted to lobby for allowing chaplains and pastors to bill for their services (a non-starter), others wanted to protect patients from being proselytized, others wanted to allow free access for evangelists, there were ethicists, ritualists, and God-knows who else all wanting to have their piece of the regulatory pie. In the end, there were two factions: one was the pastor-is-part-of-the-care-team faction and the other was the privacy-at-costs-faction. We came up with compromise rules that basically said that it's up to the patient, no matter how sick, or their family to contact the pastor and that the parish pastor could make no record of their work and no contact with the rest of the care team unless a particular hospital, hospital, or agency thought of it. Which they never do.
Later on, working out of my hospital in West Virginia, I was part of another interdisciplinary team that developed never-before-envisioned protocols for care at the end of life that covered everything from pre-hospital care, to pain management, and spiritual care. And we managed to include the clergy in the congregations with both effectiveness and efficiency.
So, when you add that to the hours of clinical training and patient care time... well, let's just say that this ain't my first rodeo.
Now I get the privacy issues loud and clear. When I was clinical chaplain through the 80's and 90's, mainly in small-town community or Catholic hospitals, and also in a hospital owned by a big for-profit corporation, I had to deal far too often with staff who loved to gossip about patients, or people they knew who came through our doors. I once had to fire a staff member for blabbing intimate medical details of persons she encountered. I don't regret doing that for one second. But loose lips sinking ships is not what I am talking about here.
What I am talking about is the unintended, but perfectly foreseeable, consequence of the current state of the HIPPA rules. And that is the culture of circling the wagons and the need for a variety of reasons of limiting information to the chosen few.
There is a kind of gnosis at work under the guise of patient confidentiality that says essentially that if the person can't charge for their time, or is not paid by the caregiving agency or institution, then they can't get in. Even if their work has a direct impact on the patient's well-being.
I have a strange feeling that if way could be found a way to turn the ordinary pastoral care of clergy, lay visitors, and Eucharistic ministers into a billable service from which the healthcare entity could take a cut, then we'd have no trouble getting our foot in the door. For all the talk about "caring for the whole person, body, mind, and spirit" that hospitals and hospices love to advertise, it is far too easy to boil it down to billable services and patient volume. You know... "no margin, no mission!"
By the time I finish writing about this, the chart will have been completed, the charge-master closed as soon as the last reimbursement is received, and the next patient will have been admitted.
But the things that pastoral ministry cares about-- helping a person make meaning out of their living and their dying, sitting with the person as they recount some small (but vitally important) piece of their story, the permission to admit that illness is a pain in the ass, and that death is scary to a person who will just accept the observation and not try to fix it, and above all the ability to take part in the ancient rituals that humans have developed over millennia of experience and wisdom will not have taken place.
In addition, no one will process with the family and loved one the connects and the disconnects between the dying persons way of making meaning and their own. No one will look at the preferred or hoped for way of dying with the actual experience. No one will walk the person through the work of making meaning out of can be a concurrently beautiful and terrible experience.
Sure, I get that the caring son who never left his mom's side was a dyed-in-the-wool atheist who never fully understood why his mom wanted to go to church every week while he sat in the car reading the Sunday New York Times. I even admire his faithfulness in bringing her! I wish that I had the chance to listen to his story of how he came to his spot and how that intersected with the care for his dying parent.
But rules are rules, you know.
Here's what we miss in our permission-first culture. It's the wonderful secret I know from years of doing rounds and popping in on parishioners and from hanging out with the retired guys who meet once a week for breakfast at the diner: holy stories happen.
You can't engineer them or plan them. The technique is the discipline not to have any technique.
There is wisdom in those stories. And Gospel in those encounters. There is holy history in the everyday encounter between the holy and the human... stories of change, of hope, of opportunities missed, and transformation experienced, of relationships broken, fizzled out, healed, or persisted over years.
Meaning is made and revealed when conversation happens. Anton Boisen, the founder of modern Clinical Pastoral Education, knew what he was talking about when he said that the people he encountered as a chaplain were "living human documents." People have stories to tell. People are stories that are waiting to be told and shared. And they come out with a wonderful spontaneity, if only you have the ears to listen.
I believe that everyone has something to celebrate and something to confess. Everyone needs affirmation and absolution. The trick is that it has to happen in every person's own time and in every person's own language. Now matter how traditional or how out-of-whatever-the-faith-box a person might be, they need the space, permission, and time to process. And a skilled practitioner of the pastoral arts helps that along tremendously.
I believe that in the telling and hearing of these stories, healing happens. And I believe that someone who can hear and appreciate and bless those stories in acknowledging that those moments were holy and that God (however they know God) is in both the living and the telling. I believe that this happens whatever the person's tradition might be, it happens for people of faith or no-faith, because we are who we are.
And the rituals that we are empowered by our traditions to lead... the prayers, the sacraments, the rites (even the last ones)... or, for that matter, the ones that we invent, are part of this artistic and symbolic language that points us to the holy. They help us navigate the awesome, unknowable, and tangible mystery that is life and death.
The process works best if the practitioner-- chaplain, priest, rabbi, imam, nun, LEV, lay reader, whatever-- can get in the room and actually do their work! So many of us train and practice and work to be present for, and sometimes facilitate, the person-centered process of spiritual care, and yet.....
All too often, when I have been called in it has been after the person has died. Perhaps for last rites, perhaps "to say a few words" at a memorial, or to preside at the funeral mass. I don't denigrate that work one little bit. It is an honor to be present to guide and help folks make meaning in those moments. It is a pastoral companionship of it's particular pattern and form.
But way too often, the work of doing that with the person, before they've died, and accompanying them--and their loved ones--through that final passage is denied and people are left alone to make what they will from that time, because, you know, rules are rules.
In the end, as a colleague puts it, God always shows up! The holy happens. Even as we bumble our way through protocols, policies, procedures, and other secular rituals of modern health care, divine caring happens. I am so impressed with the dignity and care of the countless paramedics and EMTs, nurses and allied health professionals, doctors and physician assistants, unit secretaries and admissions clerks, Hospice and acute care professionals, who extend towards the dying and their loved ones remarkable presence, dignity, skill, and compassion. I firmly believe that God's love is concretely expressed in the work of all these folks.
But imagine, just imagine, what it might have meant to that person to not only see her (or any) pastor, but to have the freedom to say anything she wanted from "can you pray for me" to "here's my story" to "get the hell out!" To have a person trained and tuned to listen and to accompany them as they make meaning of their life's story in the closing chapter of their living. Imagine what it might mean for the family to have a person who is at once a trained, experienced pastor, and a person conversant in medical ethics walk with them as they make some of the most difficult decisions they will ever have to make.
I'm just sad when once again, that me and this faith community were not given the chance to do our part, to bring a lifetime of experience and even just a smidge of that millennia of wisdom, to the bedside of another dying parishioner because some form wasn't signed, some protocol not met, some third party payer decided it wasn't reimbursable, and some administrator decided that there were other fish to fry.