Since you are now starting this article with Secrets in the title, I will confess to intentional deceit by posting a headline that experts claim will entice more readers*.
Alas, these eight aren’t really secrets, but each represents helpful “under the radar” information when considering and/or entering into hospice care. Since I wanted to keep this week’s Substack piece to a manageable reading length, I won’t get to 5-8 until next week. Sorry.
So, with my confessions out of the way, here goes . . .
#1 - You can ask hospice for a no-obligation evaluation.
Many enter hospice care because a physician (your “family” doctor or a specialist) made the recommendation. But even without a doctor’s say-so, you can contact a local hospice and ask for an evaluation. Staff from hospice will meet with the potential patient and/or family. She or he will review medical charts and ask questions about the illness. Hospice won’t charge you for this visit.
If a person is “appropriate,” two doctors (your doctor and a hospice doctor) must agree on hospice care, but that can be a next step after your personal research.
Why ask hospice to visit?
If your doctor seems reluctant to discuss hospice (or uninformed), you can take the initiative.
Maybe you just want to “explore” hospice on your own . . . you can take the initiative.
Perhaps inviting hospice for an early evaluation helps you evaluate them. Would you want that hospice caring for you or your loved one? You can take the initiative.
#2 - You can start and leave and start hospice again (and again).
What if a hospice patient learns about a treatment to help extend or add quality to her/his life? It’s easy (okay, there’s paperwork) to leave hospice and explore the medical options. They won’t be penalized for leaving. And later, regardless of how any treatment or procedure goes, he or she will be welcomed back by hospice when hospice care is again deemed appropriate.
While I could list other examples, what’s most important to stress is that entering hospice doesn’t “lock” you into only that level of care.
#3 - A patient can say “yes” and “no” to the Hospice team.
Anyone entering hospice is given a team of professionals: RNs and LVNs for nursing, Social Workers, Chaplains, Home Health Aids, and Volunteers.
Comfort care from hospice is extensive. Nurses and home health aides respond to your physical needs, from the complexity of the medication to the small pleasure of a bath. Social Workers provide emotional support. If children or teens are in the home, a Social Worker’s input on how to share and what to talk about regarding death can benefit everyone. A Social Worker also helps with forms, like benefits for veterans or family leave documents from work. Chaplains respond to spiritual needs, and are open to supporting all faith traditions. Volunteers add companionship to a patient, or give caregivers a break by sitting with a patient while errands are completed.
All this being said, with the exception of the nurse, you can say “No” to any of the team. If your rabbi regularly visits, there’s no need for a chaplain. If you have a hired caregiver, you may not need the hospice home health aide. Maybe you are just a private person and don’t want these “strangers” in your home. It’s up to you!
But please remember: the entire team can help you and your family. I encourage a “yes” so that you can meet them. And also realize that even if you say “no” to someone (like a chaplain) in the first week of care, saying “yes” two weeks later will be fine. Chaplains won’t be offended that you “ignored” them and will soon visit and provide spiritual care for yourneeds.
#4 - A nurse is assigned to you, but he or she may not be the only nurse caring for you.
One registered nurse (RN) will be in charge of the patient. You will likely meet her (or him) in the first days of hospice care. But she will not be the only nurse you see. This RN (often called the Case Manager) will oversee your team. However, if you call in the evenings or weekends, you may welcome an “after hours” nurse into your home. Hospice is on call 24/7, and there are different staff, at different hours, who may respond. (And remember, you are not the only patient. Sometimes a nurse is balancing several patients with concerns on the same day.)
Frequently, one of the team members is a licensed vocational nurse (LVN). He (or she) will handle some of the scheduled visits. An LVN’s boss is the Case Manager RN, but can respond to most of the medical tasks (like wound care, refilling medications, helping with pain management).
The various staff will have different personalities. You will connect to some better than others. But all of the nurses strive to be on “the same page” as they care for you.
So, four for now. Four more somewhat low-key secrets next week.
*Supposedly, headlining a numbered (like 3, 8, or 11) list causes more Internet buzz. Go figure! And who doesn’t want to know “secrets?” Like secrets about Hollywood stars or the best secret hiking trails according to park rangers? Well, I tried with hospice . . .
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Picture from Kristina Flour.
My book, A Companion for the Hospice Journey is available at Amazon.
Thank you for sharing the "secrets" about hospice.
And a good job you did. Thank you! I have taken hospice training twice, having lost my husband 2.5 years ago I think I am ready to step in as a volunteer.