Val shares how palliative care can relieve the suffering of both the patient and the caregiver when a loved one receives news of a life threatening illness.
00:13 In this episode Val shares that pain is an inevitable part of caregiving, but there is something called palliative care that offers relief for suffering and hope for an improved quality of life for both the patient and the caregiver. Val was frightened when her son was first introduced to palliative care early in treatment. She felt it meant the doctors thought he would not get better. Now she realizes it doesn't mean "end of life care," and sees palliative care as an especially important service for caregivers, whose quality of life can suffer when they learn their loved one has a life threatening illness or disease. She feels palliative care is important to the future of medicine.
01:58 Val compares hospice to palliative care. Val encourages all caregivers to ask their medical team about palliative care and learn more about it and options available.
02:34 Val explains that with hospice care, the hospice staff takes over the care of the patient and is trained to support the patient and family through the patient's final days. All treatment is stopped except for medications to reduce pain and anxiety.
03:36 Val next explains that the aim of palliative care is to relieve suffering: physically, mentally, and spiritually for both the patient and the family. The palliative care team includes doctors, nurse specialists, social workers, and chaplains. They work along side the medical treatment team.
4:50 Dr. Rebecca Martin, a palliative care physician https://www.wmchealth.org/physician-locator/a3f5fc1a-327e-4d50-be2e-8b4b773c3d71
was Val's source for information about the current state of palliative care in our medical system. Dr. Martin told Val that a good way to distinguish between hospice and palliative care is to understand that all hospice care is palliative, but not all palliative care is hospice.
05:05 Dr. Martin explained to Val that palliative care staff know how to ask the right questions, and they know what words to use to put the patient and the family at ease. She shared it's even important to know the order in which to ask the questions.
06:22 Val's son was introduced to palliative care early on in his treatment, when he was seen at a specialty center. However, when he transferred care closer to home he was not offered palliative care. She shared that there was a staff position that would have helped him, but the position had not been filled and no one was designated to cover the responsibilities.
06:49 Val wanted to know why palliative care is not offered to everyone and relays that Dr. Martin told her that the longer time a doctor knows a patient, the harder it is for that doctor to acknowledge a poor prognosis. Val mentions the the book, "Being Mortal" by Dr. Atul Gawande. https://atulgawande.com/
and shares that from Dr. Gawande's experience, doctors are trained to identify and solve problems, so when they're facing a patient that has a problem they can't solve, it's hard for them to acknowledge that.
07:45 Val shares that she feels every medical team needs a member who will help patients and their families see the bigger truth for each individual case. She feels this will both alleviate and prevent suffering during curative treatment and when curative treatment ends.
09:24 Both Dr. Martin and Val's spiritual director Beth helped Val see events in her life for what they are: painful and tragic. Putting words to her experience has helped Val cope.
09:49 Val shares that the next episode of Caregiver Tea Time will be about grief.
10:15 Val shares an update about a new experience seeing eagles and this gives her a feeling of connection with her husband and son.
11:34 Val shares the cheer she has for this episode: "Help is out there, and I'm going to ask for it!"
Hello, this is Val, and we are in episode two of the fourth and final season of "Caregiver Tea Time."
I wanted to call this episode "Pain Control," But the more I think about it, is pain something we can actually control? We can numb it, ignore it, and avoid situations that cause pain. But I like that old saying, "Pain is inevitable, but suffering is optional."
While I say this episode is about pain control, it's actually about palliative care. Palliative care is all about reducing suffering and improving quality of life. I just thought that if I called it palliative care you might look at the title and not want to listen.
Am I right? I certainly felt that way. My first experience with palliative care was when we were at a cancer center in New York City. My son was introduced to a palliative care nurse at an outpatient visit after his bone marrow transplant. At first, this frightened me. What came to my mind was that the doctors felt he wasn't going to get better, and they weren't telling us the whole story about his prognosis.
But I soon was reassured that the palliative care term doesn't mean end of life. It's a way to help patients through all stages of their treatment. So in this episode I'll explain what palliative care is and why it is so important for the future of medicine.
A lot of people know what hospice care is, but they don't know what palliative care is. First, I will say a bit about hospice, and then I want to focus mostly on palliative care because in my experience, it's a tremendously important issue for our healthcare system, especially for the care of young adults. I sincerely hope you and all the listeners of this podcast will ask their medical team for information about palliative care and learn more about it.
So first about hospice. When patients go on hospice care, it's paid for by either their individual health insurance or Medicare or Medicaid. Hospice organizations can be for -profit or not -for-profit. Either way, the hospice staff is trained to support the patient and the family through the patient's final days. All treatment is stopped except for medications to reduce pain and anxiety. In my experience, as a caregiver, this was just Tylenol, morphine, and an anti -anxiety medication called lorazepam.
In order to enroll in hospice care, the rule is that two doctors must certify that the person's illness is is terminal, which means that there's every indication the patient has about six months or less to live. A patient can be enrolled in hospice but get better and leave hospice and can re -enroll in the future.
So now about palliative care. Palliative care is focused on relieving suffering. And there's a big difference between hospice and palliative care. Hospice relieves pain with end -of -life medications. The aim of palliative care is to relieve suffering, physically, mentally, and spiritually. And the aim of palliative care is torelieve the suffering of both the patient and the family, and that means us, the caregivers. So, in short, all hospice is palliative care, but not all palliative care is hospice. In fact, only a very, very small part of palliative care is hospice.
Palliative care is a broad term that describes the medical specialty that aims to prevent or treat symptoms and pain to reduce suffering. The team usually includes doctors, nurse specialists, social workers, and chaplains. They help navigate the challenges of a difficult diagnosis, side effects of treatment, and the social, mental, and spiritual aspects of the situation.
I spoke with the palliative care doctor Rebecca Martin in preparation for this podcast. She shared a very simple truth that really opened my eyes as to why palliative care trained staff are so important. They know how to ask the right questions. And they know what words to use to put the patient and the family at ease. And it's even important to know the order in which to ask the questions. This can make all the difference when discussing these difficult topics.
Back in episode 1 of this season, I shared about how I struggled to discuss sensitive issues around my husband and my son's illnesses. I wanted to understand how they felt about their future and what they wanted. And a few times I attempted to ask questions that I hoped would bring us closer, but I didn't know what words to use. And when I finally said something out loud, they didn't know what to say, and when they didn't know what to say, I didn't either.
Ideally a member of the palliative care team will be introduced around the time of diagnosis and become an integral part of the treatment and the medical team. For my son, the hospital in a large city introduced us to a palliative care nurse early in treatment. But once he was better and could go longer between clinic visits, my son wanted to have his medical care closer to home.
The university hospital closer to home had a palliative care team and the hospital unit dedicated to palliative care, but they were never consulted by my son's medical team. This hospital even had an adolescent and young adult program with a staff position for a nurse who could take that palliative care role, but unfortunately, this position was not filled, so at the time that my son needed it and I needed it, it wasn't available.
So I asked Dr. Martin, "Why isn't palliative care offered to everyone?" She feels most doctors find it difficult to acknowledge the prognosis, and the longer they know a patient the harder this can be, so they avoid discussions around palliative care and end of life.
In his book "Being Mortal," Atul Gawande, a surgeon, shares from his experience. He says, "Our medical system is not set up to help patients and families prepare for death. Doctors are trained to identify and solve problems, so when they're facing a patient that has a problem they can't solve, it's hard for them to acknowledge that.
So, this is why I hope our medical system will move forward to provide palliative care as part of curative care. We need someone on the team to help us see the bigger truth for each individual case.
Earlier in the first episode of this season, I shared how my husband's diagnosing doctor took on the role of a palliative care physician. After my husband relapsed, the bone marrow transplant doctor wanted him to continue with more chemotherapy and treatment. But we were fortunate another doctor with a different outlook on the bigger truth provided a second opinion that was in line with my husband's disease and prognosis and his wishes.
Further treatment would not prolong his life and may actually make his final days quite miserable. This gave my husband a choice. He was a strong and stoic farmer that powered his way through his treatments and side effects. But now he was given time to make the most of his final days. He was at home on his tractor, and not in the hospital, receiving more treatment.
There were days when the quality of life was tough for us both. I believe a palliative care team would have had the words we needed to hear that would help us both feel better.
I still suffer at times from a very deep emotional pain over the death of my loved ones. In fact, Dr. Martin wanted me to tell you that my creating this podcast comes from a very painful place. Those were her words, but I would say yes, it does.
And Beth, my spiritual director, she helped me to name it. What I have experienced is flat out tragedy. And I like that. I feel like I have a bond with all the other humans who have experienced one or more of life's just flat-out tragedies.
And this sets the scene for my next episode of Caregiver Tea Time. It will be about grief. I believe the palliative care team can help prepare caregivers for the coming grief, because you know what? The caregiver's grief begins when their loved one is diagnosed.
And here's my special message for today. It's an update on the eagle thing I mentioned in season three about beautiful connections. You won't believe it, and I still don't understand it, but last week I was back at the farm And as I was going out to look at my field of prairie grasses and flowers, a bald eagle took off from a tree right in front of me, and it was so close I felt as though I could touch it. The white feathers look so smooth and pure white next to the black ones. It flew off to another tree, and then it flew away.
A few hours Later I decided to go back and check to see if the eagle was still there. I looked up and was astonished to see two bald eagles circling high overhead. And then they flew away to the east and I watched until I could no longer see them. How sweet it was to feel this connection to my husband and son. I just don't have words for it. But I do have a cheer.
And my cheer for today is about palliative care and the hope and help it offers us caregivers. So here it is.
"Help is out there and I'm going to ask for it."
So are you ready to say it with me? One,
two, three. "Help is out there and I'm going to ask for it!"
Cheers!
Nothing but the good things, nothing but the good things, In this world living in my heart!
Caregiver Tea Time was recorded at the Koop Studio, Irvington, New York. Engineered by Sammy Wags and produced by Bianca Groves.