When we think of hospice, the automatic response tends toward something like, “That’s not for me, I’m not lying in bed dying!” Unfortunately, and all too often, the conversation about hospice comes too late.
At Assured Hospice, we support our patients and their loved ones on the front line. In every case, we offer as much support to the families as to the patients. So why are so many hospice-appropriate patients’ not receiving hospice services until the very end - often the last week to receive and be referred for this free benefit?
Peni Cenedella is a devoted spouse, caregiver, and advocate for her husband and early education on hospice services. Peni stands 4’10” and is a powerful, dynamic, articulate woman whose spouse passed away on October 28, 2016 - just four days after being referred and admitted to hospice services by the primary care physician.
At this point, the role of hospice is to come in and manage a crisis, providing as much support, resources, and medical attention as possible in a very short time.
“My process for caring for him would have been easier - dealing with his physical and emotional changes.” Peni added, my husband’s physician was “not comfortable having the conversation about hospice,” which delayed receiving the necessary services. “We need to educate our physicians to be there for us and have those difficult conversations,” she said.
Peni had to wait six months before being able to meet with her physician to discuss the consequences of a delayed hospice admit.
All too often, the hospice conversation does not happen soon enough. Families are not able to maximize their Medicare benefit, which is a benefit Medicare recipients are entitled to. Under Medicare, family has no out of pocket expenses for RN and CNA visits, medications related to a terminal illness, incontinent supplies, medical equipment, social worker, or chaplain/bereavement coordinator.
“Assured Hospice came on and normalized the dying process and would help me through the stages,” Peni said “I could call 24/7 and somebody would come out. I did that the night before he died and somebody came for two hours at 2 a.m. in the morning and stayed until he was comfortable. He was given the medication he needed and he did not die in pain, but in peace....Assured Hospice has your back.”
As far as the physician’s comfort level with having the hospice conversation: do not wait until your doctor brings up the subject.
Peni raises a few powerful questions:
“You have to ask yourself: What are you going to do when your spouse is dying and who is going to help them?
Who is going to help you through this process and who will be with you when your spouse dies?
Peni advocated for hospice and educated her physician, who promised to make referrals earlier so others can benefit from a more peaceful dying process. Be your own advocate and empower yourself to have services in place so you and your family receive the deserved support needed during this last journey of your life. Make it your own journey.
Written by: Paul Fiorini and Charla Wright, in collaboration with Peni Cenedella
Article submitted by Charla Wright, Liaision & Educator
Assured Hospice, Serving Jefferson & Clallam Counties