4 replies, 2 voices Last updated by Paul C. Edwards 3 years ago
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    • #4031

      Paul C. Edwards
      Participant
      @pedwards

      I found the article, “Eight Things to Do While in Palliative Care” very practical. It was refreshing to see the article on point with so many things, especially¬† highlighting the misunderstandings of what ADs are, and how to determine when they are to be firmly implemented. Thank goodness for ML’s doctor who determined that her chances of recovery were pretty high and thank goodness for her brother who listened to sage advice.

      The one issue I find, time and again, in our setting, is the doctor who becomes intimidated by one or more family members who insist on overriding their loved one’s AD. I can’t begin to state how often we’ve had a good understanding of the patient’s wishes, (documented in an AD and verbalized by the patient), and some family member(s)comes out of the woodwork, breathing threats and causing disequilibrium. This becomes a real issue when the patient is no longer able to articulate her/his wishes. Our Palliative Care folks are stuck; the attending physician acquiesce to the demands; the patient’s voice is snuffed. The fear of litigation or a complaint to either the administration or the state medical board tends to be what drives many attending physicians not to uphold these AD’s. It is frustrating to see physicians give in to such fears of what other family/loved ones of the patient might do. I find that some who resist the implementation of a loved one’s AD do so out of guilt; some for other reasons. I do get the point that physicians, (and administration folks), want to avoid bad press and litigation.

      Dina had asked for more discussion around palliative needs and what chaplains are for. In my experience, the patients I’ve had the privilege to serve, tended (as the article noted) to have needs around pain management. I have been amazed at the huge impact the Palliative Care team has on a patient’s quality of life¬† when pain management goals are worked through and implemented. I think, the success is due to the team’s focus on symptom management and really exploring with the patient, her/his goals and values. Chaplains serve as resources to tease out what inspires and motivates an individual. In a supportive role, the chaplain follows up with the team to ensure that those values/goals are achieved, as best as possible.

      Paul

    • #4032

      Kirstin D. Batchelor
      Member
      @kdbatchelor

      Like you, Paul, I found the practical nature of the “Eight Things…” article helpful. I particularly like the humor part. This is something I have definitely found to be effective for myself and in working with patients. Obviously it is not always appropriate and I take my cues from patients as to when a little laughter might be helpful and when it would not.

      I also wanted to respond to your reflection on ADs and family members overriding them. We encountered this many times even in the hospice work I did, and it often became frustrating and even painful for the team. We called it “the cousin from California” phenomenon, wherein a distant family member would arrive in town and question why someone was on hospice and would encourage the local family to try different aggressive treatments or therapies. Most of the time we were thankful for the AD that spelled out clearly what a patient wanted or didn’t want and fortunately our Medical Director was very good at standing firm and and not giving in to such demands but met them instead with education mostly about what hospice was and was not. This comes back to the issue we’ve reflected on before about the need to educate about what Palliative Care is and is not. And again, this is where this article was very practical and helpful.

      To reflect a bit more on Dina’s prompt regarding palliative needs and the role of chaplains, as several of the articles have pointed out, Palliative Care being primarily about pain management and improving quality of life, obviously spiritual care can be crucial in addressing the pain that has roots in existential concerns. Obviously often that pain manifests in physical symptoms. My own tension has often been in how much to push people to explore and address this. Chris’s essay from last week spelled out clearly that his expectation was for the chaplain to push him to reflect on the bigger life questions and the spiritual pain that a diagnosis or situation can bring about. I certainly have encouraged people at times to talk about those tough things that they may not want to talk about. And I have also found that sometimes people want to talk about the normal everyday things of life. In hospice, it seemed to me that sometimes people wanted a break from thinking and talking about life and death topics. I usually let people take the lead in conversation and followed where they went. This often did lead to fruitful and deep conversations. And sometimes it did not. I have wondered whether this was always the most effective spiritual care or not. I’m curious what approaches others have taken in providing spiritual care to folks who are either on a Palliative Care service or considering it. Have you pushed more or followed patients’ leads more?

      Kirstin

    • #4034

      Paul C. Edwards
      Participant
      @pedwards

      It seems our experiences are quite similar in terms of the tension I also feel regarding how far to “coach”/guide folks in talking about the existential concerns. I have experienced many who have no desire at all to discuss those issues with me when consulted for those matters, despite others on the team discerning that such issues are a concern of the patient may have actually verbalized a fear or a wondering. I never push, but take my cues, like you, from the patient. In CPE, we are always challenged about our avoidance of some things and what triggers our own stuff. I tend not to think I am avoiding, but rather respectful of that person’s right to explore painful spiritual issues or not. Part of my core spiritual belief system is that I do not need confirmation or affirmation of the certainty of someone’s eternal destination. My role is to represent, as best as I can, through presence, active listening, compassion, etc., the divine, and allow the divine to do the rest. I don’t have to have all the details and proof of anything. That viewpoint does not always sit well with family members who are from traditions that sees that different and who believe that my role, (as Chaplain) is to “get it done” and certify that it is done. (I don’t think it sits well with my Baptist tradition also! Oh well!)

      Here is another real challenge, that brings me much sadness. I receive a consult, and, by the time I get to the patient, the patient is unresponsive and unable to engage in conversation regarding anything. The window of opportunity to explore life/death/the great beyond with the patient (if she/he were willing to do so), is closed before I get there. I choose to still incorporate, in my prayers, the hopes and longings of the patient, for a peaceful end, in a place of eternal rest. Again, my belief system is that we, (humans), don’t have to final word. Just because I can’t have a conversation with an individual, it doen’t mean God can’t. Knowing that patients do hear us, even when comatose, I will tailor my prayers, specific to their concerns/needs, and name their concerns in the prayers I pray.

      As a team, we have noted that many of our consults should have been received far upstream in terms of addressing values, beliefs, pain management, etc. I feel the same with regards to my role on the team. We have no control over that. Then there are the ones that are discharged before I can get to see them, (after numerous prior attempts), when they were not in their rooms, out for testing, rehab, etc. My hope, and prayer, has been that whatever needs I could have addressed, will be addressed somewhere post-discharge, since it was not possible while an in-patient.

      Paul

    • #4046

      Kirstin D. Batchelor
      Member
      @kdbatchelor

      Ah, Paul, I echo the sadness you expressed about either the patient no longer being able to respond or already being discharged. One of my greatest consolations is always reminding myself that I am not the only vehicle God can use and praying that the person receive the support they may need. I also struggle with those referrals wherein the team has heard something or feels that the person could benefit from spiritual care but that person does not seem to want to engage in such conversation when I visit. It is helpful to realize and remember that I am not alone in these difficulties. Thank you for that!

      As a note, I am having trouble logging into the course site from my desktop. It seems to be working from my iPad, but typing on this is a little slower! So my apologies for the short post right now!

    • #4047

      Paul C. Edwards
      Participant
      @pedwards

      Kirstin, it is good to know that I am not alone in that struggle. Thank you!

      I also find that logging in from my desktop (at work) last week, was a bit buggy. So, I’ve been using my laptop and it seems to be going fine!

      Paul

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