Cancer Diary: A Word--and More--about Hospices and Hospice Care
There will be times when someone is at your side. Other times, someone will be on call. Yet others, you will be alone. That is what I learned about hospice care from the short time Carl had access to it when he was dying from cancer. I have written about hospice care before. Good hospice is a wonderful source of support. Unfortunately, not all hospice care is good. What should you expect? And what should you require? Medicines on time, a bed and everything else needed set up before the patient arrived -- it took days to get those from the first hospice.
What should you expect? You should expect compassion, competence, and coordination. Hospice care is not just about easing pain—it’s about preserving dignity. A good hospice team communicates clearly, responds promptly, and anticipates needs before they become crises. You should expect timely medication delivery, proper equipment setup, and a care plan that reflects the patient’s wishes. If these aren’t happening, speak up. You are allowed to ask for better.
DNR (Do Not Resuscitate) This is one of the first and most emotionally difficult decisions families face. A DNR order means that if the patient’s heart stops, no CPR will be performed. It’s not about giving up—it’s about honoring the patient’s desire for peace over intervention. Hospices should help you understand what a DNR means, how to put it in place, and how it affects care. If they don’t, ask. And if they pressure you without explanation, that’s a red flag.
Hospice care is often covered by Medicare, Medicaid, and many private insurance plans. But coverage can vary—especially for medications, equipment, or extended services. Ask for a breakdown of what’s covered and what’s not. You shouldn’t be surprised by bills during a time when your focus should be elsewhere. Transparency is part of good care.
The intake process should be swift, respectful, and thorough. It includes medical assessments, paperwork, and discussions about care goals. If it drags on for days—as it did in Carl’s case—that’s not acceptable. Time matters. The best hospices move quickly to ensure comfort from the start. If the process feels disorganized or dismissive, consider switching providers.
Hospice is meant for patients with a prognosis of six months or less, but that doesn’t mean care should be rushed or impersonal. Some patients live longer, and hospice should adapt. Others decline quickly, and hospice must respond with urgency. The time frame is not just medical—it’s emotional. Every hour counts. A good hospice understands that.
Hospice can be a lifeline. But it’s okay to demand better. Carl deserved better. Everyone does.
For other Cancer Diary posts, click HERE.
Blog editor's note: As a memorial to Carl Leaver, MSI Press graphic arts director and designer, who died of Cancer of Unknown Primary August 16, 2021, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog carries an informative, cancer-related story -- and is open to guest posts: Cancer Diary.
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