When hospice nurses were asked, what hospice is to them, they wrote the following:
– Hospice is Being There
– Hospice is Wishes Respected
– Hospice is Having a choice to be home
– Hospice is Telling the truth, even when it’s hard
– Hospice is a gift
Hospice. It can be a controversial word. For some, it stirs up anxiety, panic, fear, death – for others, comfort, a blessing, an answer. Many people limit hospice to being just about dying when, if you think about it, hospice really is about living the best you can with the most comfort, peace, and self-respect possible in your last days.
I remember a session I attended with Barbara Karnes, a pioneer of the hospice movement, she said something very strange: “Dying is the hardest thing we live through.” Pause, think about that. “Dying is the hardest thing we live through.”
She’s right, we don’t think about the living part because the dying is so terrifying, but we are alive while we are dying. It’s that strange part of life, this place of transition, the path we will never re-trace, it’s here where hospice comes in.
With November being National Hospice and Palliative Care Month, I felt this blog should take this opportunity to speak to these specialties and why they are so important.
Hospice is focused specifically on end-of-life comfort and care for anyone with a life expectancy of 6 months or less. Palliative care differs in that it deals specifically with people suffering from a serious illness but not necessarily dying from it. Palliative offers comfort care to long-term suffering people and, like hospice, shares the goal of making daily life more enjoyable and rich.
Hospice care is about managing a whole body of care around a person who has limited time left. Outside of the medical care and services, hospice also cares for the caregiver. Offering emotional support to the caregiver, emphasis on their own self-care, and even after the loss has occurred, most hospices provide bereavement services for at least a year to the caregiver.
Often issues surrounding spirituality, meaning, hope, pain and forgiveness are more focused during a terminal illness. As part of the hospice healthcare team, Hospice Chaplains make Spiritual Care a priority. Chaplains offer a supportive presence and acceptance of different beliefs, cultures and values.
Usually earlier than they do. When there’s a very good chance that the illness won’t be cured and the person needs help with the pain and symptoms, that’s a good time to talk to hospice about what they could do to help (www.nhopc.org). It’s all about their goal, are they still looking for curative treatment? If so, they aren’t ready for hospice. Hospice is for someone who doesn’t wish to pursue cures, their goal is quality end-of-life vs. quantity end-of-life.
Because hospice is provided by Medicare and Medicaid and because it really does make a difference for people in quality of life and quality of care, most insurance covers hospice care. Hospice is actually even an opportunity to relieve financial burden because hospice covers medication, supplies, and staff coming out to the home.
// do you have more questions? leave them in the comments below //
According to the National Hospice and Palliative Care Organization, 90% of adults believe it is the job of a family member to care for their dying loved one – I don’t think you’d find many hospice workers who disagree. What a hospice worker or volunteer would say to that care-giving family member is this, “I am here to help you as well. Yes, I work for hospice and your loved one is our patient, but you are their family, and I am also here to guide, support and help you. Let me. This is too hard to do alone.”
This testimonial video chronicles Karen and her family’s journey with hospice. Initially, Karen thought hospice was a bed, a place she had to go and essentially wait to die. She shares in this video how different and truly wonderful having hospice has been for her. Here’s what her husband, Bill, has to say about it:
“The beauty of hospice is that it provides us with the resources we need to live our lives here at home … my wife is able to be [home] everyday to interact with the kids, interact with me… [hospice] puts the patient in a position to maximize whatever energy they have and it tends to have a positive impact on the patient.”
To learn more about Hospices around the nation, check out these resourceful & informative websites:
– Coalition of Compassionate Care of California | www.coalitionccc.org
– Hospice Foundation of America | www.hospicefoundation.org
– National Hospice and Palliative Care Organization | www.nhpco.org
– Do you have any experience with hospice or palliative care? What was it like?
– What are the first words you think of when you hear the word “hospice”?
– What questions do you still have about hospice or palliative care?
We’d love to answer them either in the comments below or an upcoming sequel to this blog post.
Hi Molly –
Some people think hospice is a death sentence. Well in the bigger picture we all are actively dying, from the day we where born. I see hospice is a support system for the family and to help someone leave this world hopefully as comfortable as possible. Most all the families I have worked with have had a positive experience with hospice. I would rather die at home than in a hospital or board and care. I am grateful that you have help share the truth about hospice. Great blog, excellent job my friend!