The hardest things to talk about are the most important. We all hope to live to a ripe old age, but not everyone get there. November is always my month to ponder life, not only because my mom and I both have birthdays, but because she died just after her 74th birthday of Alzheimer’s. November is also National Hospice and Palliative Care Month, a time to celebrate all the folks in our community who provide that special end-of-life care not only for patients with life-limiting illnesses but for their families.
When I meet people in the community and we talk about hospice care, there’s still so much misinformation out there about what hospice is and who it can help. I’ve had people tell me that they’ve heard that once you go on hospice, you’re not allowed to eat anymore, or that they give you drugs that make you sleep until you die. Nothing could be further from the truth.
I’m always glad when I get the chance to dispel those myths. What I’ve learned from working in hospice and also being a daughter whose mom was on hospice, is that the care you receive as a family is the biggest gift of all. The hospice team comes into a loved one’s home, where they are the most comfortable. And while they aren’t in your home 24/7, they are always just a phone call away. Nurses make emergency visits in the middle of the night, social workers help with end-of-life planning, and work through family dynamics that can pop up when not everyone is on the same page about what happens next. Chaplains provide spiritual comfort, volunteers visit with patients and offer family members a break, and nursing assistants help with personal care and bathing. Whatever equipment and medicine are needed is delivered directly to the patient’s home and all of it is paid for by Medicare.
Plus the care doesn’t stop when your loved one dies — the bereavement team keeps in touch over the next year, offering grief support, cards, letters, annual memorial services, and a listening ear on those days when life feels tough and lonely.
To qualify for hospice, you have to have a terminal illness that two physicians agree you likely have six months or less to live if your disease runs its typical course. My mom only was on hospice for a week before she died. According to the statistics on the National Hospice & Palliative Care’s annual report on hospice, that’s not unusual. Many folks get on hospice almost too late — 25% of hospice patients are on five days or less, and 50% are on 18 days or less.
Sometimes, folks on hospice live longer than they would because of the care they receive managing their symptoms, supporting their family, and helping with pain and anxiety. I’ve even seen people do so well that they no longer qualify for the care and “graduate” off hospice. But they can always come back. Hospice is an unlimited Medicare benefit.
It’s hard to think about dying, yet it’s going to happen to all of us someday. Knowing how we want to be cared for when that time comes can be tough to talk about, but luckily, there are some great websites to help. If you’re looking for some ideas, visit the site: www.theconversationproject.org to learn how to start talking about it. Or if you want more information about hospice and palliative care, visit www.caringinfo.org to find out the difference between these two important types of care and when you might need them, as well as resources for creating advance directives.
When you gather around the Thanksgiving table next week with family and friends, it might be a great time to talk about how you want to be treated when your time comes. Everything is easier to discuss over a big piece of pumpkin pie and coffee, and knowing what’s important to you and your family is a better gift than anything you’d find on sale on Black Friday.