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| Lizzy Miles, MA, MSW, LSW |
Lizzy
Miles is a Thanatology Rockstar. Deservedly so. Since serving as a Hospice
social worker, among her other involvements, she has initiated the first North
American gathering of a “Death Café” (The profile for the Columbus Death Café is
here: http://deathcafe.com/profile/49/),
and seen its influence spread to other events across the country.
She
recently wrote on a subject near and dear (and frustrating) to my heart. The
article, “When Patients Refuse the Hospice Chaplain” can be found here: http://www.pallimed.org/2014/10/when-patients-refuse-hospice-chaplain.html.
In eleven-plus years of serving as Hospice chaplain (among my other
involvements), I can attest to her observations and recommendations. I would
add two things, though, one of which I hold in greatest certainty, the other of
which I offer as a question, or at least an invitation for comment.
The
first addition I would make (an “Amen,” if you’ll allow it), is to her
observation that patients often decline the services of a chaplain because they
have “an existing long-term relationship with their church, mosque, synagogue,
or other group. They often believe their spiritual leader knows them and will
be a supportive presence during their end-of-life journey.” She also notes,
though, that social workers need to assess further throughout the course of
care. “Sometimes patients expect they will receive more support than they do.”
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| There's one near you, and a locator function on their website. |
I would
say that patients routinely receive far less support than they had imagined. This
is not only due to the natural discomforts, fears, and personal challenges to
lead to avoidance by clergy and others, though that is a significant factor.
Some patients find that their community of faith and its leaders are very
willing to call, visit, and assist, but in ways that betray their lack of
perspective and/or training in end-of-life care. In short, there can be a lack
of involvement, or a lack of competence, or both. As a result, there are unmet
needs for which the chaplain (or spiritual care coordinator) may be helpful,
despite the patient’s or family’s earlier estimation. Therefore, I
wholeheartedly endorse the recommendation to social workers and others working
with Hospice and palliative care patients: “Check in occasionally with patients
and families regarding their church support.”
Regarding
my other, less certain suggestion for this excellent article, I agree with the
admonition that we “don’t forget the atheist, agnostic or non-believer” who may
“avoid religious or spiritual support.” But I also believe that the “spiritual”
aspect may be poorly defined for most of us.
In my
experience, we tend to identify spiritual and religious as related in their
supernatural orientation, but differing in their level of organization (being socially
or dogmatically prescribed, in the case of religion). My reason for inviting
comment is my uncertainty regarding the terms I use, as well as my perception
that we lack effective alternatives to “spirituality” as the appropriate
descriptor.
Specifically,
along with Lizzy Miles, I worry that we deny atheists, agnostics, and
non-believers the support they would find helpful when facing their impending
death. I would also point out, though, that many of those would consider
themselves to be spiritual, or to possess spirituality. (Among several volumes
exploring this issue, the most popular seems to be The Little Book of Atheist Spirituality, by Andre Comte-Sponville.)
A chaplain, adequately prepared to provide care to those of diverse spiritual
backgrounds, would be an appropriate source of support even for those who
reject any notion of “spirituality” prior to a clarifying definition of that
word.
That
clarified definition that I would suggest may fit another word better. But as I
wrote earlier, if that word exists, I don’t know what it is. So, my proposal is
that we offer the services of the chaplain/spiritual care coordinator in a way
that clearly expresses how each of us experiences “spirituality” as “the
framework by which we derive meaning from
life, and assign value to its various
elements.” What life means, and what we value within it, seem to me to fit the
common use of “spirituality.”
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| The Center of Hospice Care: The Patient. |
Again,
if there is a better word, let me know. If there are objections that some avoid
any sense of meaning or value in life, I would love to collect some specific
examples. But there seems to me to be a universal tendency among human persons
to think that their existence has some relation to the society and world around
them, and that certain elements of their life have more positive or negative
value than others. Facing their impending death will likely require some
re-examination, if not adjustment to that meaning and those values. Thus, it is
my belief that in the midst of that experience, the support and encouragement
of an adequately prepared chaplain/spiritual care coordinator is invaluable.
So, if
your definition of spiritual differs, or if the definition I offer fits another
word better, or if you have any other question or comment, I look forward to
hearing from you.
9 comments:
It’s good to have sincere, personalized spiritual care when one is receiving palliative care. How can family, friends, and caring vocational spiritual leaders best learn bedside palliative competence?
Marianne LaPorte Matzo and Deborah Witt Sherman open a great dialogue in their book, Palliative Care Nursing: Quality Care to the End of Life (New York: Springer,2001). They make the point that spirituality is what a person feels it is to them, relative to interpreting their reality (5). Matzo and Sherman provide a brief tool for understanding what “death” means to different religions (12-16), and suggest asking a patient, “What things give you meaning in life?” I feel that a chaplain’s palliative team responsibility to patients goes beyond physical comfort care into a spiritual realm. In that way the “spirit” vital signs are distinct from the physiological.
Is emotional care spiritual, since it is beyond physiological? I think too often emotional and spiritual definitions get blurred. For instance, a chaplain is able to minister to spiritual needs that may be beyond that of the training of a mental health or counseling professional. I encourage chaplains to help each dying patient come to best understand the afterlife choices they can make for themselves.
jp
You suggest a marvelous concept. There are, in fact, certain "spiritual vital signs" that I can remember having seen (or seen to be absent). But I have generally addressed them intuitively as an individual practitioner. Are there such indicators of spiritual need, or even distress, that would be tangible in the lives of diverse patients? And that would be sensible from the perspectives of diverse chaplains as well?
My initial take on helping dying patients "to best understand the afterlife choices they can make for themselves," would be that it crosses a line into prescriptive interference, but only for those patients whose spirituality includes no such variables, or even any perception of an afterlife at all. I'd be interested in hearing more from your perspective on that.
And thanks so much for the encouraging comment, too!
Hi Wm! Thank you so much for your article and too kind comments. There is so much more that could be said about the nuances of patient spirituality. I am admittedly limited in my knowledge, which is why I rely on heavily on the hospice chaplain. There are times where, for whatever reason, a patient is adamant about not wanting a chaplain but then they have a ton of spiritual concerns. In addition to reassessing (asking again), I will also consult with my chaplain for advice on how to proceed and talking points. The same happens with nurses if social workers are declined. We still assign a social worker to the client. They may not visit in person, but they are behind the scenes, paying attention to the situation and helping the other team members whenever possible. I LOVE working in hospice because the teamwork amongst the whole interdisciplinary group can be a beautiful thing. One final side note, it was my editor that expanded to include agnostics and non-believers. There have been agnostics and non-believers who have enjoyed the company of our chaplain. The chaplain was really good with letting the patients lead the discussion, and he often would go in sideways. That is to say, an indirect approach... playing music or cards to develop the relationship. So I agree with you that the opportunity is there for chaplains to add value to those who don't know quite where they stand in terms of "spirituality". As I'm sure you have seen, with hospice and end of life, it is hard to get the semantics exactly right. Some people did a quick read and assumed either I was taking over the chaplain role OR I was pushing chaplain on everyone. I am very grateful that you took the time to digest the article and that you "get" what I was trying to say.
Bill, I can’t say that I am an expert in these thanatological issues you address…in fact I am not sure I understand most of it on a basic level. One line jumped out at me early on in your post (though it may not be the main point) when you quote "the rock star", Lizzy Miles, as saying, “Sometimes patients expect they will receive more support than they do.” I am a pastor and have felt this at times in my own life and the life of my family. In our self-sufficient, individualistic society we often underestimate the amount of care needed by all involved.
It is a tragic indicator of how non-relational we have become as a society, even within our faith communities. This can be the result of a number of factors. Let me address two.
First, if our communities are large enough to facilitate our western individualism and the “safety” of personal distance, the patient may never have actually entered into relationship (or overestimated the level of relationship) with the spiritual leaders of his community and so they will be even less connected during the end of life season. I have seen how reluctant pastors (myself included) are to even perform the memorial service for those they don’t know. Death, it seems, never works well with our calendar and it
Secondly, if, as Andrew Root in The Relational Pastor maintains, we use relationships merely as a means to grow group attendance and maintain group loyalty, then when the person no longer has anything tangible to contribute to our group we may intentionally or unintentionally de-prioritize our “relational” investment in their life. If our ministry is truly relational then we will value our connection with the person so deeply that we will desire to make the most of the time we have together.
Thanks for the post.
Even if you were to find the perfect word or phrase, it might matter little, supposing for instance that the patient had negative experiences with clergy in the past. Depending on each patient, I try to make do with a couple of sentences like, "I'm here without an agenda to give you space for talking about things like what is most important to you, what has given your life meaning and purpose, and whatever happens to be on your mind today." When the patient is the one who initiates the question of what I do, I usually just say, "I'm mostly here to listen and just be with you." I think keeping it simple is the key, but of course all of my efforts may be no match for stereotypes or painful associations with religion and yes, even with spirituality.
You may be interested in my post about this same subject. To sum up, the issue of labels can be overshadowed by so many other factors. The post is: http://offbeatcompassion.wordpress.com/2014/02/28/juliet-tis-but-thy-name-that-is-my-enemy/ Hospice chaplain Karen
I think even if you had the ideal label that would not be the issue. Sometimes patients have a painful history with anything or anyone associated with religion and yes, spirituality, too. Rather than trying to capture a single word or phrase, I say something like, “I am here just to listen. Perhaps you might want to talk about what is most important to you right now, or what is meaningful to you.” Of course what I would say depends on the patient, but the underlying spiritual concept behind it all, if we want to boil it down to a single word, is “connection.” I try to convey that by showing that I am far more interested in listening than talking. In sum, stereotypes and negative histories far overshadow what a “better” word or term could do. To see my own post on this same subject, please see: http://offbeatcompassion.wordpress.com/2014/02/28/juliet-tis-but-thy-name-that-is-my-enemy/ Sincerely, Karen B. Kaplan, hospice chaplain
Sorry to be so long in "moderating" your kind comments. As you can see, both came through. I'm looking forward to checking in on your post after some deadlines are met the end of this week. Toward training my students toward listening rather than talking, I use a list of the profoundly awful things we find to say whenever we try to say something profound, and give them a starter course in crafting good questions. I even try to avoid steering those I serve toward "spiritual" matters by asking, "What should I know about your circumstances in order to be of best help to you?" It's cumbersome, but it works well. Thanks so much for the comment, Karen.
Thanks for the comment, Greg. I wonder if at some point we might discuss whether "community" is the correct term for such religious organizations as you describe in your first factor as fostering relational distance, if not anonymity in those who imagine themselves to be vitally connected with others in the body of Christ. To your second point, though, I will note that our Hospice pharmacist's sense of humor emerged at my very first case-management meeting. I was not "official," yet, having expressed that as the new pastor at Glenburn, I should probably give the church board an opportunity for input on my decision to accept the vacant chaplaincy position. He offered that they would be more likely to approve my involvement if I were able to present it as "a church-growth opportunity." Ironically, though the pharmacist meant it was unlikely for patients to begin attending regularly...at least for very long...we have a significant cadre of widows, widowers, and other survivors who have found great comfort, peace, and support in our congregation. Perhaps, then, there is value in re-prioritizing our investment in those nearing their end-of-life. (Of course, when that becomes our motivation...it's probably time to quit.) Thanks again!
Good way to describe the best approach: "go in sideways." When I'm teaching bereavement intervention I use a long list of all the profoundly bad things we say when we think we have to make some sort of statement. I encourage asking questions that allow the patient and/or family member to "empty their cup." My usual phrasing is cumbersome, but it works well for me: "What should I know about your circumstances in order to be of best help to you?" The responses have ranged from the sublime to the ridiculous to the ludicrously petty. When a patient in our acute-care wing said the best help I could be would be to tell the nurses at the nearby station-desk that "We can hear you," I did so. That opened the way to finding out about a lot of other needs, too. If it helps, I find that sometimes the only access I have to our patients and families is through helping the nursing and social work staff members address the issues that arise, but for which "I don't need a chaplain." Their "reassessing" has, at times, taken the form: "It really seems like you do." And so I do, sometimes, get to "take the mound in relief." (Can't help the baseball analogy. I'm finishing some things up before turning on Game Six of the World Series.) Thanks so much for your comment!
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