Let’s talk hospice

One of my very favorite things to do as a nurse is to educate. I feel so fulfilled when patients and their families feel empowered after I’ve been able to sit down and share some of my knowledge with them. Even as a new nurse, I recognized the importance of hospice and palliative care. It doesn’t take long in the medical profession to realize that we cannot “fix” everyone. And furthermore, even if we could, it really shouldn’t be our goal 100% of the time. Some of my most memorable experiences as a nurse have been regarding end of life decisions and care. I really feel that I will end up as a hospice nurse someday when I’m burned out on the exciting fast-paced nature of acute care.

The very first thing I remember learning in nursing school was that never, ever, under any circumstance should you attempt to comfort a patient or family with the phrase “It’s going to be okay“. Because, you would be lying to them. Even the healthiest of patients can take a turn for the worse after an event or surgery. Even when doctors, nurses, therapists, do all the right things, people die. And so often, in their journey to the end of life, they suffer.

I have found that the concept of hospice and palliative care is misunderstood but a large majority of people. There are so many misconceptions about what hospice and palliative care is, what their goal is, and how their loved one will be cared for under it.

“They’re just going to give my mom enough pain medication to kill her”

“Once he’s on hospice, he won’t be able to do the things he wants to do”

“Accepting hospice is giving up”

“I can’t stay at home if I am on hospice”

“If my dad is on hospice, he can’t see his doctor, take any medications, or receive any medical treatment anymore”

None of the above things are true, by the way. Don’t feel bad if you thought they were, because you’re in good company. Hospice is a benefit that everyone is entitled to. It does not cost your family money and you will never receive a bill for it. The individual must qualify with a diagnosis where they’re not expected to live past 6 months. The ultimate goal of hospice is to support patients and their families at the end of life, in whatever capacity they need it. If they are in immense pain, hospice services provide medication to help alleviate it. If the patient and/or family want counseling and grief services, hospice provides that (and not only during the dying process, but for months and years after). If the family needs education on what to expect at the end of life, whether it’s the physical manifestations of actively dying, or the process of making arrangements after the loved one has passed, hospice provides that too. It is a wonderful and amazing service that few too many people take advantage of. It is completely patient and family driven and the professionals in the organization are there as little or as much as you need them to be. They are highly trained people who are doing this because they’re passionate about it. You don’t wake up one day and decide to be a hospice nurse. It is not for everyone. It is truly a calling.

So as you can imagine, the idea of perinatal hospice and palliative care is not quite “mainstream”. But why? For one, babies aren’t “supposed” to die. Parents should never bury their kids. We’ve all heard that phrase and of course, in a perfect world it’s absolutely true. From the very first moment I became a mom, I assumed that all of my kids would outlive me. Because that is what is supposed to happen. And with the amazing advancements in medicine and technology, that idea is shared by neonatologists and other physician specialists everywhere. They do some unbelievable things in NICUs these days. They can keep a 24weeker alive now. They transplant organs into newborns. The therapies and treatment modalities for these kiddos are incredible, and some people think that advocating for hospice and palliative care is giving up the opportunity to potentially “fix” these babies. Choosing this route for your baby is giving up on him. Because, miracles happen and you never know.

But what happens when you do know? When second and third opinions have all confirmed the same thing: your baby’s heart is sick, and it’s getting tired. Even surgery isn’t an option. If he makes it to term, machines will have to keep him alive until he receives a heart transplant. We do not know the long term effects all of this will have on his body. On his brain. On his life. We do not know if all of this medical intervention will even keep him alive anyways. So what happens when you do know?

You choose the palliative option for your baby because the thought of your child suffering a painful death hooked up to machines and lying in ICU incubator is worse than anything you could ever imagine. Watching a code team attempt to resuscitate your baby would surely give you nightmares for the rest of your life. I have been in codes where the team knows the efforts are futile. Some are called quickly, and some are dragged out because the sobbing wife, mother, husband, father is standing right there. You need them to see that you did everything you possibly could to save their loved one. And there I would be, watching them, everyone in the room knowing that you can’t resuscitate a heart that doesn’t have the ability to pump. I would likely scream at them to please stop, and would be wondering why I even let them start CPR in the first place. So, here I am. Here we are, my husband and I, having made the most devastating and difficult decision we’ve ever been faced with. All in the name of love. We love baby boy so much that we can’t see the merit of putting him through all that medicine has to offer without any hope that he will be able to live a normal life. Of course, this decision is fluid, and if by some miracle he is born and his left ventricle somehow functions as it should and he proves everyone wrong, all of this changes, and we fight. But you’d better start lining up for autographs because baby boy will have books and movies made about him and his ability to defy literally the worst of the worst case medical scenario known to doctors everywhere.

I think that palliative and perinatal hospice is going to continue to gain momentum in an age where more and more conditions are being diagnosed prenatally. I feel “lucky” in the sense that I have had several weeks to let this news about baby boy sink in and have been able to mentally prepare for it. Surely if we didn’t know about his condition prior to his birth, the scenario where he’s being resuscitated in an ICU on machines would have been our fate. We would have had to make split second decisions that we likely would have questioned for the rest of our lives. I am so grateful for the amazing team of professionals who have cared for us through this journey. The high risk OB at MFM got me a copy of A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief

Her nurse calls to check up on me, to ask if I need anything or if I have any questions. The cardiologist cried with me when she was faced with giving us the devastating diagnosis. Everyone has hugged me, and I mean really pulled me in to comfort me. I think it’s easy to see people in the medical field as hardened, jaded people, especially for those whose job is to give terrible news every.single.day they go to work. But they are all people, who are in this line of work because they’re the best kind of human: the one who can empathize and comfort another human when they are at their most vulnerable. After having just been given the worst news of their life, they have that ability to pull you in, lift you up and be the exact support you need in that moment. Even if 10 minutes prior, they were a total stranger to you. They know that medicine is not infallible. And even if their course of action your situation would be different, they facilitate whatever it is you need and support you in it. I’m grateful I’m already a nurse because this experience would surely make me question why I wasn’t. If I’m ever able to provide to one person what my amazing team has provided for me, I will consider my career a success.

Maybe someday I will be strong enough to become a stronger advocate for perinatal hospice and palliative care than just writing a blog post about. I’m not sure if my experience will be beneficial or detrimental to helping others navigate this process (you know, it’s taboo to cry harder than the family, which is the main reason I don’t do pediatrics, NICU, or have pursued hospice yet). I also understand that this route is not for everybody, and respect those who choose aggressive treatment for their loved ones. It’s a very personal decision and not one that can be made lightly or in haste. If there is anyone reading this who would like to reach out to me, I’m more than happy to connect. We’re all in this together.