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PCHPCA: November is National Hospice and Palliative Care Month
Each year, the Putnam County Hospice and Palliative Care Association (PCHPCA) recognizes National Hospice and Palliative Care Month in November. This is a time to spotlight the importance of hospice and palliative care and help the public understand the benefits of this type of serious-illness care and the importance of advance care planning.
The theme this year is Courageous Conversations.
In a culture that often teaches us to resist mortality and a healthcare system defined by interventionism, the seemingly simple act of having a conversation about dying can have a profound impact. What does death mean in my life? If I am faced with a terminal diagnosis, how would my values shape my end-of-life journey? How do I want my loved ones to engage with me toward the end of my life?
It is difficult to think about these questions, but having courageous conversations with family, friends and doctors can mean the difference between having the type of death a person wants – one that matches up with their values and desires – and a death that is more complicated, confusing, and traumatic.
Throughout Hospice and Palliative Care Month this November, PCHPCA is encouraging everyone to have these Courageous Conversations and start a meaningful dialogue toward the goal of “dying a good death.”
For information about hospice, palliative care and advance care planning, visit www.pchpca.org or reach out to us at contact.us@pchpca.org.
Or talk with someone you know: PCHPCA board members are Amber Alexander, Jenny Charles, Bethany Combs, Marilyn Culler, Shannon Detro, Crystal Fortner, Alice Greenburg, Tammy Keenan, Sue McCune, Meagan Montague, Judi Purvis, Brand Selvia, Christina Wagner and Laury Wallace. PCHPCA Director is Elaine Peck.
PCHPCA board member shares an end-of-life story
The Putnam County Hospice and Palliative Care Association (PCHPCA) hears many end-of-life stories. These stories are always hard, but sometimes they are also stories of peace, comfort and enduring love. We work toward the vision that everyone’s end-of-life story can have its own kind of beauty and be a source of inspiration and connectedness. A board member shares her family’s story below, in hopes that it might help others.
When I was asked to share my story about the experience our family has had with cancer care, I did not realize how hard it would be to describe. Considering I have been in hospice and palliative care for over 13 years, I am sure I hold many strong beliefs about how we best care for those with life-limiting illnesses. Our family’s experiences this year reveal that it is more important than ever to educate and advocate about hospice and palliative care, as well as healthcare choices and planning, and it is my hope that our story will help others.
In January 2022, my brother-in-law was diagnosed with a very aggressive, late-stage oropharyngeal cancer. When he and my sister asked about the prognosis, the oncologist responded, “Let’s not talk about numbers and prognosis; let’s talk about treatment options.” The oncologist then went on to say, “We are going to knock this cancer out.” At age 50, of course, my brother-in-law wanted to do everything possible to treat this cancer.
While treatment was a reasonable option given his age and health, I question the lack of effort to educate my sister and brother-in-law so that they could make informed decisions. How could the doctor withhold information that - for this type of cancer - survival odds are 60 precent in five years for stage one, but diminish at later stages? Did he make sure they truly understood how devastating the surgeries and treatments for this type of cancer can be? As a nurse practitioner, it appalled me that they were not offered a counselor to help them prepare for what lay ahead.
And so, they began their journey of surgeries, intensive care stays, chemotherapy, radiation, immunotherapy, and hundreds of thousands of dollars in scans, X-rays, medications, and symptom management treatment. The first rounds of treatment consistently failed, and the cancer would grow and spread rapidly the moment he stopped a therapy regimen. They tried one thing, then another, then a combination of two things, then three, then four. Nothing worked. He became violently ill, unable to sleep, experienced extreme pain, and had no ability to leave his bed or home except to go to his appointments. He lost over 150 pounds, and at 6’6”, he has become a shell of who he once was. A gastric feeding tube was placed because of his inability to swallow. He was given over 15 different medications and a pump for his chemo at home.
Ten months after diagnosis, after my brother-in-law had wasted away to nothing and experienced not one day of peace or comfort, he and my sister asked his oncologist again about the prognosis. The physician looked at my brother-in-law and said, “Mr. ------, this cancer will take your life. Maybe tomorrow, maybe next year; we cannot cure this.” Even after my brother-in-law told the oncologist’s office that quality of life was important to him, the oncologist never talked with him about hospice, advance healthcare planning, or healthcare representation if he became unable to speak for himself. And again, the oncologist offered more treatment options.
My brother-in-law continues to choose cancer treatments. He seems to feel that if there is treatment, there is still hope for survival and a cure. He faces what all patients face when they want to stay alive, and they are not provided with complete information about their prognosis, their care options, or how they might live better longer. There is ALWAYS hope but not ALWAYS a cure. There is hope for quality time with loved ones and comfort. Was this option ever offered? No.
He did finally receive a referral to palliative care for symptom management; however, I was completely disgusted to hear that the palliative care MD, the very person who is supposed to understand and be able to communicate about options for quality of life and comfort, stated to my sister (when she asked about hospice care), “Mrs. ---- Do you KNOW what hospice care is? Do you KNOW what that means? I don’t feel we need to discuss that just yet.” I could not believe it. Nothing is working. The cancer is spreading rapidly. He is losing weight, not sleeping, wasting away to a thread of a man, and it isn’t time yet? My sister looked at her and spoke. “Ma’am, my sister is a hospice practitioner. She owns a hospice; I do believe I know what hospice means.” The palliative care MD said no more and just handed them a POST form and asked what treatment he would wish for if he were found not breathing. I was appalled that the palliative care provider did not take the time to thoroughly explain the POST, discuss my brother-in-law’s current condition, and talk about hospice care before it became too late for him to receive the quality of life he wishes to have.
And as for my sister and her sons - where is the counseling or support to help them deal with their grief and anguish over what is happening? My sister has had no sleep, is losing weight weekly, and is caring for a sick man while working a full-time job and attending online college courses. The family should not be forgotten in this journey. Grieving begins the moment a diagnosis of serious illness occurs.
While it is probably too late for my sister and brother-in-law to have any quality of life together at this point, I am determined to do what is necessary to help fix this broken system for others. While there were many other dynamics to our story, as with the countless others going through the same issues, it is my hope that we can get the message out about end-of-life healthcare choices and the support that is available.
A PCHPCA board member’s story
All of us will die, and we either die very quickly or very slowly. Quick deaths - through accident or an acute medical incident – can bring shock and trauma to the loved ones who survive. Slow deaths - from aging or a terminal illness – can bring different challenges and great uncertainty for both the dying person and his/her loved ones and caregivers. Below a PCHPCA board member shares a personal story in hopes that it may help others.
“She’s 105 years old! Wow, she doesn’t look that old at all. What amazing care you are giving her. She is so lucky to have you looking after her. You are quite something.”
My sister-in-law hears this all the time. She is 74 years old, and she and her mother have always lived together - first in her mother’s home, now with her mother in her home. My sister-in-law take great pride in the compliments she receives and wants to give the best possible care to her mother, but it is taking its toll on her own health both physically and emotionally.
My mother-in-law has always appreciated her daughter and what she is doing for her and what she has given up for her. But over the last few years, that is not the case much of the time. Due to concerns about possible addiction, she is not allowed to take the dosage of pain medication needed to mitigate the leg, shoulder, and back pain she has to endure. She is scared a lot of the time and is not quite sure why. Perhaps it is because she lives back in the time of her youth when her life was anything but secure. She is tired, hurts, has no appetite, and says she is ready to die. She takes all these feelings out on my sister-in-law, who will not hear any of it. In frustration my sister-in-law says, “Mom, you’ve got to eat. Here, this is one of your favorites. You have got to eat to keep your strength up. The doctor says you can’t lose much more weight.” My mother-in-law tightens her lips, but eventually she takes a few bites. She feels terrible, but my sister-in-law has a sense of accomplishment. She can now be put to bed; she is very tired after all. This is how the days go by.
How does a family caregiver know when to take the words of a loved one seriously when they say, “I am tired; I am not hungry; I hurt; I am ready to die.” And if you know when, then how do you accept them, especially when you are afraid you will be looked upon as one who does not care or love any more, and is just giving up?
In Putnam County there are people who can help with these difficult questions. The Putnam County Hospice and Palliative Care Association believes that information, honest communication, and support can make the difficult end-of-life journey easier. For information and resources, visit www.pchpca.org, call 765-301-7614, or email contact.us@pchpca.org.