SO – you have a Christian Science patient on your Hospice
roster…
A
few insights and related practical advice
Last
edited: 8-10-2012
Overview
When my 87 year old devoutly Christian
Scientist (CS) father was clearly entering his last months and weeks of life, I
knew that it was going to be up to me – his avowedly non-Christian Scientist
daughter (despite having been raised in the church) – to be his
caretaker through to the end. My Dad had been living with me and my
husband for some six years by this time, and while we all knew
(pretty-much... or so I thought) what we'd signed up for with this kind of
arrangement, I knew too, full well, that we could not "do" those last
weeks alone.
Being fully cognizant of the oil/water
nature of a Christian Scientist in Hospice (or in medical care of any nature),
but also being a trained researcher and a former academic, I got curious
about how the collective field of Palliative and Hospice care viewed this kind
of situation. My reviews of the publicly available literature found two
case studies but nothing which offered the
kind of practical insights on how we might navigate, together, the
exceptionally unique challenges ahead of us. This blog-article is my
personal offering and is shared in hopes
of (1) adding to the pool of "findings" for anybody else who may be
doing a similar kind of search --- and (2) offer practical ideas and insights as an assist for any who may find themselves on this
same path . Being fore-warned, and armed with a way to think about
these six particular factors where
experience and expectations are most likely to diverge (between the CS and
non-CS persons/professionals), it is hoped that the “end-of-life times"
partnership experience might be less frustrating for both any non-CS caretakers
AND any Hospice Team professionals involved in their care, and the path eased
for the CS patient themselves, too, by virtue of the fact of this additional
precedent for their participation with Hospice in the first place.
This
article is a distillation of my contemporaneous field drawn case notes,
tempered with a significant measure of outright academic-type research,
cooked with a considerable amount of carefully reflected, heavily processed,
hind-sight -- and is now in at least it's 18th draft -- however, ultimately,
it mostly began to "gel" in mid-January of 2012.
I feel a
need to be clear here: nothing in these pages is "officially
sanctioned" by anybody - these words reflect my sincere attempt to better
understand and unravel some of the complexities we were dealing with, given the
particular constellation of variables at play for us (for example, the very
concept of a "CS patient" - in and of itself, for instance, may
seem to be something of an oxymoron...but it does happen).
Please
note: There are five "end notes" indicated by lower case Roman
numerals in purple boxes embedded in the text - each relates to further
details and/or background information for those particular concepts,
and in a few cases also, sources. While
every effort has been made to be scholarly responsible, rigid academic
documentation has been sacrificed to word count and the driving desire to make
available this practical, in-the-field-useful, information. I also
use quotation marks rather extensively – primarily to indicate the typical
phrasing or terms used by most Christian Scientists, as relevant to the
circumstances, and as it may apply.
OK – here goes:
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SO – you have a Christian Science patient on your Hospice
roster…
A
few insights and related practical advice
Granted – it is not a common experience, but it does
happen. There are already a couple of case studies in the literature
regarding work with patients and families who remained devout to the faith [i] , but this is intended
to be a slightly different kind of offering. Although raised as a
Christian Scientist (CS), I left the church at the age of 18, and as
daughter/caretaker, recently mediated for a devoutly CS father while working
with an absolutely terrific Hospice team. The following six insights towards navigating between
these mostly mutually exclusive worlds came clear along the way, and I offer
them here in hopes that they may be of use to others who may find themselves facing
these same challenges. Certainly every patient, every interaction, brings
with it its own lessons – these were some of ours [ii].
1) Understand that – because it is fundamentally an
“either/or” choice for them, by virtue of the fact that your Christian
Scientist (CS) patient has enrolled in Hospice (or for “medical support of any
sort”), they have effectively elected to cut themselves off from their church,
their church-friends, and likely their entire social circle. Such a
choice does not come without consequences on many levels. For example,
your CS patient may well prefer that their church friends not be looked
to for any of the traditional kinds of support that other church affiliated
friends might be counted upon to offer. Further - they may, in fact,
actually insist on upholding a public pretense of “all being well”, and that the
condition of there being “no unmet needs at the moment” be the story offered
and perpetuated when it comes to any and all such contacts or
inquiries.
While the CS church itself insists that
there is no formal shunning of CS church members who choose medical help or
hospice, there is a deeply held and commonly shared core belief which makes it
clear that this is effectively the outcome of any such decision. As a
rule, when it comes to dealing with any sort of physical "challenge, claim,
or false-belief”, how to manage it is fundamentally indeed an either/or
choice (i.e., all "challenges" being dealt with solely through CS [termed
"radical reliance on CS"] vs. any other possible path);
and while the ultimate decision is indeed a private and individual matter,
the peer pressure among CS church members to chose “rightly” is
profound and powerful (...it may be unspoken, but the perception or
self-expectation of this choice and attendant consequences may be no less real
than if it were printed on a banner and hung across the front door).
For example, there typically is ready and somewhat proactive
support among CS church members for those who choose the expected route
for their members and stay with the CS path alone for healing (which includes
as a part of it the frank and publicly declared decision to having
"eschewed any and all medicines and medical care” and firmly committing to
remain so -- this is a requirement which is an actual precursor to work
with any "Journal listed" CS practitioner towards a CS based
"healing", as well). With that piece in place, CS church
members do rally around and provide whatever support may be needed by the
patient and family, be it household care, meals, running of errands, the
“reading aloud of the daily lesson”, ongoing support in “right thinking”, prayer, etc..
But – for CS church members who may choose
anything less, there comes attendant with that a heavy sense of betrayal which
also reverberates more widely than one might think. While good wishes may
be offered, the defection is effectively a serious matter for the
collective. There is no getting around the monumentally awkward spot that
both the CS patient and fellow CS church members then find themselves in.
Again – even if under spoken – the anticipation or expectation on the
part of your CS patient at consequentially causing such disruption in the
fabric of the existing church collective (by choosing instead to enroll
with Hospice, say) may be powerful enough on its own to require a self-imposed
full resignation from whatever circle of support might otherwise have been
hoped for from that realm, if not a formal resignation from membership with the
church itself. (In our case, I was able to talk him out of that last
step, but it weighed heavily on him anyway.)
What this means in practice: understand that your CS patient is
going it alone in just about every way possible, and may well be carrying an
extra load if also contending with an added sense of “betrayal” by their
failure (real or imagined) to uphold CS belief and church doctrine. It is
worth noting, however, as we found in our experience, that some individual
CS churches may actually be a bit less orthodox than others in this regard, and
may tacitly (sometimes even actively) supportive of members who opt for medical help in
those situations where “CS alone” is just not "meeting their needs" –
So the question is worth exploring with your patient, even while remembering
that such an acceptance (tacit or otherwise) at any level is indeed quite rare
and far from the norm ( … but it can, and has, happened – and there may be some
comfort found in even just the fact of that quiet precedent...). Quietly,
as well, there may be individuals from the church who will choose to support
your CS patient and family anyway should they learn of any needs; however that
is the exceptional CS friend who chooses to do so.
2)
Understand that – there is no tradition of clergy visits in the CS church…
What that means in practice: the question of a clergy visit - even if the clergy-person
in question is non-denominational - may be almost as foreign to CS experience
as the medical measures already enlisted. One of the main reasons for
this is that there is no concept similar to “clergy” in the CS church
itself. A CS patient typically will be polite but won’t know
how to even begin to talk with even a non-denominational minister, because
their fundamental operating beliefs (about literally almost everything!) are
just so very different. In spite of the word “Christian” in the name of
“Christian Science”, there is in practice so VERY little by way of a common
ground between CS and other "Christian" churches (or teachings) which
might serve to support even the most basic of clerically – or or even
spiritually - focused conversation, that any such visits may well
be rejected at the outset due to an anticipation of discomfort with the kind of
discussion such a visit would likely involve. However – as already
established – individual situations may well vary, and it is advised that any
clergy-person go in with the expectation that just about everything he/she takes for granted as “fundamental” will not
likely be viewed as such by their visitee.
By way of example, in the CS church, the only
spiritual “leader” is considered to be Mary Baker Eddy as represented in the
officially approved church literature. (To this day - it is fair to say
that the CS church is almost fanatical in guarding that arrangement. Be clear:
there is NO disrespect here, in stating that much - nor is any intended in
anything said in this article! This is not a discussion of the religion
itself - we're talking about only personal insights from living and dying on
the fringes of it, here.) After the Church Approved literature from and
about Mary Baker Eddy herself, there is a select group of recognized high level
“Teachers” in the CS church (who go through church recognized training in order
to gain that status), who provide intensive and formal “Class
Instruction” in Christian Science (participation in which is viewed as a
requisite part of being considered a good and dedicated CS church
member). If your CS patient is indeed one of these “Class Taught”
persons, one might think that the respective “Teacher” may be a spiritual
resource for your patient (....it is possible…highly improbable, but
possible...)… BUT, as has been described above: if the choice has been
made to enlist with Hospice, then this “Teacher” is also then almost guaranteed
to also be lost to your patient as a spiritual personal resource. At the individual church level, the “leaders”
are called “Readers” who are periodically elected from the church membership –
a position which reflects no special training, generally, in anything
comparable to a typical church ministry. That either the “First” or “Second
Reader” of the local CS church may be of spiritual comfort to your CS patient
cannot be assumed – everything will likely hinge on their own individual predilections and experience (as they will
likely not have had any such training, especially through the CS church).
Therefore, the question of how to most
productively offer any sort of assistance and support to a CS patient and their
family/caretakers as may pertain to any part of a spiritual dimension
(especially as may be regarding the actual experience at hand) is perhaps best
relegated to an excessively sensitive
and curiosity-based exploration with the family about (1) their individual and personal perception of their needs and desires – which they may, or
may not, be prepared to fully articulate,
and (2) their own curiosity as
regards all that is happening. DO PLAN
ON revisiting those questions in a quietly accepting but ongoing manner.
(Or to put it another way: if they let you in the door at all as a
clergy-person, know that you are on foreign turf - and that in fact, you may be
something akin to an alien for them as well!)
3)
Understand that
– to begin with, in CS there is no functional concept of “death”…
What that means in practice: the ultimate of all ultimate
betrayals is unfolding before everybody’s eyes here. According to the
teachings of CS, there is the idea that if one “believes enough”, then “there
is no death”…. And so, here is the ultimate paradox, the overwhelming dilemma,
and perhaps the challenge-of-all-challenges for the CS patient and their
caregivers.
Here is one tactic which proved the
most useful to my Dad and me as we were moving through this dilemma:
confirm at every turn (like a broken record) that “the spiritual being
continues to be as perfect and complete as it’s always been – it’s the
human shell that is failing, and our part of the deal is to do all we
can [Hospice and I] to keep the human shell as comfortable and available to the
spiritual being as possible, for as long as your perfect spiritual
being and “The Father” needs the use of it [insert the patients choice of term
for that concept, of course] – and that is exactly what we are doing by…. ”
offering/providing/administering the medications that help make that so,
etc., as we see may be called for along the way - and as changes
take place….. [in CS, the term most often used is "Father-Mother-God"].
That story line proved to be an effective and acceptable avenue for my Dad and
allowed him to cooperate with our efforts, and in fact was of considerable
comfort to both my Dad and me, as a way to move along with what needed to
happen, as it evolved along the way. Ultimately, how he
defined what was going on for himself I do not know – or just how great was a
sense of self-disappointment at not again "prevailing over the body” (as
he had lived so much of his life believing in; as had been the defining norm
for him), and if there was any disappointment in having ultimately failed to
physically “heal completely” and return
to the active life he had been living until those recent weeks, I
do not know. (Or – maybe from his point of view - perhaps in the
end he did indeed ultimately find his idea of “total and complete healing”,
after all!? That piece of his experience is certainly beyond the certain
knowing of any of the rest of us at this point – but it does not feel out of
line to hope that this may be so.)
4) Remember: Very
much like what the disembodied voices from the loudspeakers in the some Metro
stations say to travelers: Mind
the Gap.
What that means in practice: As part of most intake procedures as well as treatment
protocols, it’s usual (if not required)
to ask questions regarding “how
are you feeling” and “where does it hurt” and “how long have you been feeling
that way?” – but when dealing with a patient who has spent years pointedly
denying credence to any and all physical sensations or limitations (all as part
and parcel of the teachings of Christian Science), it will be important to
realize that they likely have neither (a) any experience in recognizing, owning,
and labeling such things as physical
sensations and limitations on any
level, and (b) likely also won’t have the vocabulary to explain what they are
experiencing in their bodies, even if they did own up to noticing what was
going on, as well as specifically where
whatever may be happening (or not), in that regard. While some of these
types of questions are absolutely required by law to be asked and answered, and
professional licenses may be at stake were they not part of the professional
care experience, such questions are generally a very poor match to the typical
skill set of most Christian Scientists – most are genuinely and totally ill
equipped to respond appropriately with relevant information. In fact,
exasperation and frustration on the part of the patient, in the face of
repeated questions they genuinely don’t know how to answer, is actually
not out of line even as the questions must be asked.
Additionally, especially as pertains to
caretakers, ongoing effective pain management may be especially
challenging for the Christian Scientist patient for exactly these same
reasons. It is reasonable to expect there to be an ongoing wrestling
match between experience and expectation. The CS patient may have very real
trouble with cognitive dissonance here.
Essentially, there can be real trouble with (a) the whole notion, concept, and experience of physically administered
medications as actually having any noticeable effect at all, given (b) that the practiced denial
of any physical sensation --- it may equally apply to any *relief* that meds
may actually and realistically be bringing them, when judged by other
indicators. The cognitive dissonance of the whole experience may be
substantial and all such communications may require creative and careful
navigation on the part of all caregivers in the process. Know that - as a
caretaker - your practiced observational skills are going to be key, all along
the way.
Generally speaking, some Christian
Scientists might seem to never actually have come to terms with any aspect of
the fact that they inhabit a body at all (as according to CS belief, only
the “spiritual being” is deemed “real”), and this disassociation can complicate
things tremendously, given that
the whole process at hand has to do with separating from it… (not that I
have any advice about that; simply being aware of this conundrum can
sometimes help, at least to some degree). It may be very important
to keep in mind that - for someone who is not practiced in listening to and
honoring the needs and abilities of the body - the Christian Science
patient cannot be relied upon to start listening to it now either, with
any consistency or reliability. Certainly, a stubborn refusal to believe
in the growing frailty of ones own body is not unique to CS’ers, but you can absolutely
expect it to be a feature of the experience (and expect to encounter it
repeatedly) if you do have a patient who comes from a Christian Science
background.
There is an additional implication of the
point just made: even as caregivers and
the Hospice workers can observe clear evidence of the good, the comfort,
the beneficial effect and the relief that comes to a body with the use of some
medications, the CS patient may fight to maintain the belief that medications
of any sort “don’t/didn’t do any good” and on that basis actively (and at
some point(s) along the way, even adamantly) refuse anything further
(i.e., feeling better enough to begin to
fight against continued medication can lead to confrontations which equate
to pure ethical issues in some situations and circumstances. There are no easy answers here [iii].)
In our case, in the face of these kinds of assertions, I did my best to
patiently explain why I believed the meds were indeed working – what I saw and
observed in him as a result of them – and because my Dad trusted me, in the
face of my assertions and in his growing tiredness and increasing pain, he
would eventually back off in his refusals, and eventually end up complying with
– if not outright asking for - their
continued administration. Respecting individual choice and control remains important all along the way, of course
– but it remains incumbent upon trusted caretakers to serve the best
interests of those in their care – and it can be especially tricky when the
patient, him/herself, is dubious or confused
about their value.
5)
Remember:
Expect that there may be many otherwise hoped-for or expected conversations
around end of life times that may never ever take place, for both the patient
and any care takers or family members. While
this particular factor may be shared with many non-CS patients, it may be
particularly true in this kind of situation.
What that means in practice: generally speaking – the notion that “one’s spiritual
being continues to be perfect and complete in every way even as the physical
body fades away” fits very comfortably with most Christian Science
teachings. Beyond that, though, there may be many discussions typically
thought of as important as end of life approaches that may never take place,
both for and with Christian Science patients – i.e., it’s next to impossible to talk about any aspect of dying if
there’s near total denial that that’s what’s happening in the first place, let
alone regarding any other issues that may be pertinent around the fact that
this is what is happening (practical or otherwise).
There generally is little fear about
death as taught by the CS church (i.e., death and illness, by definition, are “illusions” and
“are not real”, as per fundamental CS teachings); there are no last rites; and
typically there are no funerals. For many Christian Scientists, end of
life matters are entirely left up to the individual and have no tradition or
guidance around them. Given this
lack of a framework around end of life matters in the CS church and teachings, it
may make participation with Hospice services even more of a blessing for the CS
patient and their care-taking family -- and in the best of cases, the blessings
of such participation will totally offset the challenges brought on by their
having chosen to do so.
6)
Remember:
Precious and dear, wonderful Hospice workers - you're taking on babes in the
woods here! OR, to be brutally frank: one way or another, CS
patients and their care takers are perhaps the population *most in need* of the
kinds of guidance and support in which Hospice absolutely excels (even as CS
patients and their families may proverbially be arriving at your doorstep
uniquely ill equipped for the joint journey ahead).
What that means in practice: understand that your CS patient and their family or
caretakers are coming to you with perhaps more than their share of special
needs (as highlighted above), and likely also as a result of having run
out of otherwise CS church sanctioned resources. While there are CS
church sanctioned “Christian Science Nurses” [iv] as well
as a number of “Christian Science Nursing Homes” [v]
in existence around the country, there is nothing akin to traditional nursing -
or any version of Hospice - offered in them, through them, or by them.
Further, in no instance do any of these entities provide or offer any sort of medical assistance or
treatment, no pain management other than prayer, nor do they have an
understanding of what is physically happening along the way (practically,
objectively, or otherwise). Odds are – again by definition – the CS
patient on your roster is not going to have an ongoing involvement with either
entity (if there ever was one prior to enlisting), but it may be useful to know
that this is yet another choice your patient has made along their way to coming
into your care.
From the perspective of this firmly non-CS
daughter who was full time caretaker of a devoutly CS Dad, the prospect
of navigating this mutually unfamiliar territory ahead of us without the
assistance of at least one experienced guide was totally terrifying. The
way I’d led into discussions regarding potential enrollment with Hospice with
my Dad was to put it this way (as often as opportunity allowed, and as
his abilities were deteriorating in very self-evident ways for him): we
were “clearly entering territory and times that neither of us had any
familiarity with, and just like Lewis and Clark [since we happen to share a
passion for history], enlisting a guide who did know the territory and terrain ahead, and who had
traversed it before, would be of unparalleled value to both of us”;
he found he could comfortably agree with that. By that point we were firmly on our own – and
of course I will always be deeply grateful he made that choice.
IN SUM – a CS patient in Hospice
unquestionably does present a number of additional challenges in the work
needing to be done, on the part of all concerned. It can certainly be
argued that there may be few people on this earth who are more skilled at
holding fast to two or more wholly contradictory beliefs at the same time than
a long-time devoted Christian Scientist – a skill which can be a particularly
confounding factor in working with end of life challenges. With a bit of
background on the unique perspectives, reasoning, and background experience
involved though, along with sensitivity to the likely predilections which come
along as part of the equation (i.e., almost built-in) , a
path forward can be mutually devised among the willing.
Certainly the needs are great.
Distilling the insights and pulling together this article as a means to offer
them in support of others who may come upon a similar situation is an attempt
to contribute to the collective cause. The CS patient in Hospice is
perhaps its own kind of unique territory. Please consider this
article as a down payment towards my eternal gratitude to all who do this work,
and for the field of Hospice, as a whole.
[i] Two
articles already in the professional literature related to the Christian
Science patient are highly recommended for their full attention to relevant
theory, background, and case precedent:
(1) Gazelle, G. , Glover, C. &
Stricklin, S. (2004). Care of the Christian Science Patient - a case
Discussion in Palliative Medicine. Journal
of Palliative Medicine, Vol. 7, No. 4, 585- 588.
(2)Perry, L.P., Lapid, M.,
& Richardson, J. (March 2007). Ethical Dilemmas with an Elderly
Christian Scientist. Annals
of Long Term Care, Vol. 15, No. 3.
Also: For a particularly clear, well
researched, and deep exploration of these and other questions – see the book: God’s Perfect Child: Living and Dying in
the Christian Science Church, by Caroline Fraser, August 1999, Metropolitan Books; ISBN
0805044302. (561 pages)
[ii] Where necessary, useful, and appropriate, the typical
terms and phrases as used in Christian Science are used in this article – all
identified by the use of quotation marks.
[iii] For another such experience already discussed in the
literature, again please refer to the second of the two articles already noted
above: Perry, L.P., Lapid, M., & Richardson, J. (March 2007). Ethical
Dilemmas with an Elderly Christian Scientist. Annals of Long Term Care, Vol. 15, No. 3. Online: http://www.annalsoflongtermcare.com/article/6909
[iv] Quoting from the CS Church website: http://christianscience.com/prayer-and-health/talk-with-someone-or-get-help/christian-science-nurses :
"Christian Science
nurses are people who help individuals who need skillful physical
assistance while relying on Christian Science treatment for healing. Firmly
grounded in Christian Science themselves, Christian Science nurses help foster
a healing atmosphere and help people function as normally as possible while
healing progresses. The care they provide can include such things as helping
people bathe, preparing special modified foods, bandaging, and helping people
who need assistance to move about. Christian Science nurses do not diagnose,
administer drugs, or provide any sort of physical therapy or other medical
treatment."
[v] Quoting
from the CS Church website: http://members.christianscience.com/healing/christian-science-nurse/facilities/ :
"Christian
Science nursing facilities or houses provide a sanctuary where an individual’s
desire to rely solely on prayer for healing is upheld by the spiritual
reassurance and practical care given by Christian Science nurses.
These
organizations offer 24-hour skilled Christian Science nursing care. They may
also offer:
“Outpatient”
care for those in need of a single visit, or requiring brief daily attention,
such as a bandage that needs changing.
“Home
visits” for those whose needs can be met within two or three hours.
“Rest
and study” rooms for those who desire a haven for prayer and study but do not
have Christian Science nursing needs.
“Respite
care” for short-term assistance at the facility, so that caregivers looking
after loved ones are temporarily relieved of ongoing responsibility for
care."
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