|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.”
|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.”
|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.