June 19, 2019 at 12:53 pm #4858
The first of our WEEK TWO lessons will lead us into the experience of the palliative care patient. Please read 3 short articles:
Eight Things to do in Palliative Care
Tailoring Palliative Care to Fit the Patient
Tending the Garden Through the Eyes of a Cancer Patient
Some of this is basic information, yet I’d like you to have access to the information for I think it’s great to share with patients. I’ll chime in later with specific questions, but wanted to get you started.
My apologies for the delay–I was actually with a friend much of yesterday as he was learning of his cancer diagnosis, exploring options, and sharing the news with his four young sons. In the midst of the pain, I was able to witness some great palliative care–a hospital staff willing to be creative to meet the needs of this young family.
I’m grateful for all you do to care for people!
June 20, 2019 at 2:03 pm #4861
A quote I wanted to share from an “ancient Chinese medicine textbook:” (I saw this at the NHPCO conference years ago)
If the body is sick, the mind worries and the spirit grieves.
If the mind is sick, the body and spirit suffer confusion.
If the spirit is sick, there will be no one to care for the body and mind.”
I like the reminder of the great importance of tending to one’s spirit. Truly if our patients’ spirits are support they are more equipped to cope with their bodily ills. How have you seen patients tend to their spirit? What do you do as chaplain to tend to other’s spirits?
June 21, 2019 at 3:06 pm #4865
Richard Rohr said that if your spiritual caregivers aren’t talking to you about death, you don’t have good spiritual caregivers. In Chris Hammons’ article “Spiritual Care from a Patient’s Perspective” he asks right away “what do I want, need and expect from my spiritual caregivers?” What do you think is the most important function of a chaplain? What do you hear your patient’s expecting of you?
Then in his article, “Tending the Garden through the Eyes of a Cancer Patient” he uses the metaphor of garden, which I appreciate. He chooses to focus on the full garden, not the weed. How do you help your patients focus on the garden rather than the weed?
One way I do that is with a heavy focus on life review, seeking what one can affirm and bless about their life. There are many good life review tools around. Here’s a link to the work of Dr. Harvey Chocinov, a palliative care doctor in Canada: https://dignityincare.ca
I encourage you to peruse his website for further information and tools. Let’s talk about what grabs you the most.
Wishing everyone a good weekend!
June 21, 2019 at 4:23 pm #4866
Here are some of my reflections:
“Palliative care is to manage pain, not to keep the dying alive long after the point of meaningful recovery.” Amen! But seems to support a palliative care = dying position.
“Pastoral Care focuses on quality of life.” I worked really hard on this with our system team and developed a questionnaire, but it was eventually determined that it would not be utilized and these things would just come up in meaningful conversations. I think this would be an excellent tool for enhancing conversations. I am not able to access my work email since I am on medical leave or I would send you all what I put together for feedback.
“Palliative Care is offered to the patient who is expected to recover.” In my experience, this is not true. We tend to utilize palliative care as more end of life care, which is not appropriate. Or to have conversations about AD and MPOA. Or to have family conferences.
I, too, like the garden metaphor. I am a gardener, and I understand the problem of weeds. They can keep us from seeing the beauty of our garden. Also, a garden is seasonal. I believe in the seasons of life. Barbara Brown Taylor wrote the book “Learning to Walk in the Dark.” She talks about how the waxing and waning of the moon might be a more apt metaphor for our lives than the full blown sunshine – we all can hide behind a smile and say everything is fine. How do we help our patients focus on the garden rather than the weeds? We listen to their stories and share what we hear. I believe we cannot dismiss the weeds, as they are real. My children do not want me to have any bad days with my cancer. No issues. Totally positive and hopeful, which is hard some days. I still see the garden and the bigger picture of good, but I need to have my feelings validated as well of the weeds.
To answer our moderators question – What do you think is the most important function of a chaplain? What do you hear your patients expecting of you? I believe our most important function is to listen and to help the patient come to their own understanding of the meaning and purpose of their illness. Patients want to be heard. They want their pain and experience to be important to their caregivers. They want to get well. The want to be missed and to be cared about tangibly. They may or may not want prayer. A non-anxious presence. We bear witness to the struggles of others and validate them.
One final thought – I liked what Chris said about when there is more stress there is more pain. This was in the article about energy, which is one of my main struggles as a cancer patient. He talked about conserving, generating, and acquiring energy. I think that makes sense- especially the conserving part. I tend to do one thing a day and then watch TV and read. That is about all I can handle right now, which I tell people feels so weird and not like me. I am an achiever and tend to do more in less time than most, so this has been hard for me. I have to make myself generate energy by going for a walk around the block with my dog, going out to lunch, etc – but these things matter as I am getting out of the house and the loneliness of that.
Enough for today. It has been a good week. I have chemo next week so will respond as able.
June 24, 2019 at 10:57 am #4868
I am wondering how many people are in this class. I don’t see many posts.
June 25, 2019 at 10:49 pm #4870
Thank you, Trish, for that reminder about Barbara Brown Taylor’s metaphor of the waxing and waning moon! This is so apt to all of life, and especially when we face illness. I think many get trapped in the thought that they must “stay positive.” I already feeling wary for my friend I mentioned last week as he is consistently saying he only wants positivity. Sacred spaces make room for the weeds, the dark side of the moon, etc.
Trish, I’d love to know about your questionnaire sometime!
I’m glad you’re working to conserve your energy! Continued prayers for you!
You asked about participants. We have 4, but have not heard from Deanna and Marc since the introduction. I hope you both are ok!
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