Most people who use hospice say their only regret is not calling sooner. In my humble opinion, hospice and colonoscopies represent the best the US healthcare system has to offer. It’s the hedgehog concept: do one thing and do it well. Hospice embodies the slang term IYKYK.
Only 12%-15% of Medicare beneficiaries' days in the last year of their life are spent being cared for within the highly cost-effective, interdisciplinary, coordinated advanced illness care model known as hospice. When I bring up the idea of hospice as an option, most people tend to recoil in horror- as though a call to hospice actually summons death. WE NEED TO CHANGE THIS! You cannot get into hospice unless you have a terminal condition with a life expectancy of around 6 months. In 2020, the average length of stay for Medicare patients enrolled in hospice was 97 days.
Why is Hospice So Great, You Ask?
Well, exhausted caregiver, I will tell you. Since nothing is as expensive as hospital care, every service provided by hospice care is so much cheaper so Medicare isn’t going to be stingy. When sh*t is getting real towards the end I AM TELLING YOU YOU NEED THIS. Here are just some of the benefits of hospice:
Need diapers? They gotchu.
An actual Registered Nurse comes by twice per week to check in on your loved one.
Caregivers comes to bathe your senior.
All the comfort meds you can ask for- pain meds and antibiotics delivered to your door.
A 24 hour nurse hotline to call whenever you want and they can answer any question you have.
Need a wheelchair or other assistive device? No problem- when would you like it delivered?
Is your senior sore and achy? Easy- massage services will come!
Feel like listening to the guitar or harp? Is 2:30 or 4:30 better?
Social workers, chaplains- THEY ALL COME TO YOU!
Swallowing getting tricky? PT/OT/Speech are there to help with swallowing.
Shower chairs, oxygen tanks, toileting supplies, beds are all available and delivered to your house within hours to days.
There are 4 levels of hospice care. Most commonly a stable terminal person is cared for in their home receiving routine care. There is also crisis care in an inpatient facility like a skilled nursing facility or continuous home care. This infrequent situation occurs if there is an acute crisis like out of control pain or similar. Lastly, and that which must be remembered, is respite care. Respite care offers temporary care in an inpatient facility like a nursing home to allow the caregiver to have a short break. There are rules about the frequency of this but it is an option.
So What’s the Catch?
To state the obvious, the biggest downside of hospice is, of course, the realization and (hopeful) acceptance that your loved one is nearing the end of their life. But here’s the thing, we spend so much time fighting death and avoiding the discomfort and for what? We are all terminal. We all hope to pass on in comfort and without pain, surrounded by loved ones and the things that bring us comfort and joy. To witness and usher someone from this life to the next, while extremely difficult, is also something in which I have been honored to participate. As a nurse I have had the privilege to nurse people throughout their dying process and I can tell you it is truly a sacred experience.
Oh, and another significant catch is that hospice care doesn’t cover the 24/7 caregiving that people often need at the end- especially the very end. And this is a big deal. Most hospice patients do not have ANY out of pocket costs and Medicare Part A Covers up to 100% of the cost. However it is crucial, dear reader, that you understand that while hospice provides a visiting nurse it does not cover the cost of the around the clock care that is needed for someone who is bedridden and cannot turn or feed themselves. A common pitfall that I see over and over is that people do not realize how much and how often bedridden people need to be turned, changed and repositioned. When you cannot move yourself you can become stiff and uncomfortable very quickly. You have to turn someone every 2 hours to prevent bed sores. You have to offer a toilet/bedpan/diaper change every few hours and of course it just works out that someone will need a change or the bathroom just as soon as you finish turning and repositioning them. Around the clock care is usually provided by some combination of family members, close friends and hired help. Most people, if it is financially feasible, opt to pay for nighttime care. It is not an option to forego care overnight. It is tempting to think that your loved one will sleep overnight and not be in need of anything but I can assure you this is not the case. There is a reason there is an overnight shift in a nursing home. If you try to forgo it, your hospice caregivers will quickly and decisively set you on the right path.
How To Make Hospice Happen
You can’t just call up and ask for hospice. You need to be referred by a healthcare provider. Oh, and a referral to hospice doesn’t mean you will get accepted into hospice. You can, however, talk to your senior’s healthcare provider and ask for a hospice referral- they will give you their opinion on the matter. There is a quick turnaround for the referral and there are strict guidelines to be accepted. If someone is offering you a hospice referral, however, I suggest you strongly consider it. I have long joked that if someone in healthcare offers you an epidural, a narcotic prescription, an inpatient psychiatric stay or a hospice referral you should probably accept it. People in the practice of providing these four services know what they are doing and these services are not routinely offered unless they are really needed.
A hospice referral is generally warranted if you have a terminal illness AND a significant health decline resulting in decreased ability to move or care for yourself, more frequent hospitalizations, significant weight loss. Your hospice provider will review medical records provided by your healthcare provider and a hospice representative will come to talk with you about what hospice is and what to expect. It can feel like a whirlwind but you can absolutely pause and consider your options if your senior is a hospice candidate. It’s ok if you aren’t sure if you are ready- they are good at this. Ask lots of questions.
Hospice Myths
Let’s review some commonly held misconceptions about hospice. Hospice is not just for cancer or dementia patients; there are a lot of health conditions that can qualify someone. Also, you can be in hospice for longer than 6 months but you will be evaluated periodically to make sure your condition is still terminal. Hospice is not euthanasia- it does not hasten death. It does, however, let death come naturally. Hospice does not mean you have given up. It is about embracing and supporting someone in the time they have left.
Hospice will always hold a special place in my heart for two reasons. First, it was invented by nurses. In the 1960s one badass by the name of Dame Cicely Saunders fought for pain management and dignity for the dying. Shortly thereafter another trailblazer, Florence Wald, worked to establish a hospice center to care for the dying. Also, having experienced hospice twice with my own family members I am here to shout its virtues from the rooftops. My mother in law was in hospice for a few weeks and my dad was in hospice for 2 years. Every hospice professional I have interacted with in both instances was supportive, knowledgeable and professional. I never felt silly asking questions and they provided calm and confident guidance when my family needed it most. I encourage everyone to be open to and curious about this fabulous resource.
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