On Death and Dying: Hospice 101

There comes a point where you're no longer prolonging life; you're simply prolonging death - the paraphrased words of one of my patients.

Nursing is my second career. I started off thinking I'd be an actress but before that could even begin I morphed into a bookseller. Desperation and poverty led to corporate America. I spent almost 12 years in that world, and I was good at it. After working for a particularly toxic organization, however, I started to ask myself what I wanted and what would have meaning for me. I'd love to tell you that I landed in nursing with careful thought and vision. I didn't. By happenstance, I was having a conversation with a stranger (a.k.a. teacher? Angel?) who was oddly insistent that I had told him I was in nursing school. I wasn't. In fact, nursing was the very last thing I had thought of being. I was a English/History type of girl, not a Math/Science girl. Deal with blood and guts all day?? Feces?? Was he out of his sweet and gentle mind?? BUT, two things did appeal, working three 12 hour days (i.e. four days off a week) and wearing pajamas (a.k.a. scrubs). (By the way, most of my career has involved 5 10's and business casual cloths and scrubs aren't actually very comfortable.) I was working on a bachelors in Organizational Communication and my school did have a nursing program, so I figured, what the hell? The program intrigued me... enough. Then I took Anatomy and Physiology from a brilliant professor... and I thought, "what a brilliant machine the human body is!" The long and the short... I stuck with it. I did very well. I passed the nursing exam with flying colors. It's a point of pride for me. Like most new graduates, I thought I'd travel the traditional path: med-surg (medical-surgical) or cardio (cardiology) unit, moving on to the ED (emergency department) or ICU (intensive care unit). Eventually I'd go on to do travel nursing or become a SANE nurse (sexual assault nurse examiner) and later... much, much later, do hospice. Well... as most of us know, usually our "plans" don't happen exactly as we anticipate. Because I chose to move back to my home state after graduation, I had no contacts and the "nursing shortage" doesn't exist here. Despite my Magna Cum Laude BSN and life experience (not a young 20-something), I found myself working in long term care. I hated it. Every day I looked at nursing, my career and life and thought, "have I made the MOST expensive mistake of my life?" At almost $100 grand in debt with student loans, it was a very real concern. It was a tough year. Honestly, when I come across a particularly ungrateful or difficult family (it's usually not the patient), I still ask myself this question.

By the way, something like 60% of new nursing graduates leave the profession before their second year and another 10% don't make it through their second year. There's a reason for that. As a side note, to those thinking of doing nursing: 1) burn out is high and yes, it will happen to you; 2) think long and hard about it because most times, it's not about saving someone's life, you didn't have time to sit and touch someone beyond the physical and you're not the hero; and 3) your education is expensive and you will not make enough money to compensate for that expense. That said, good nurses are desperately needed and if you have a passion for caring and are just a bit co-dependent, then this might be the job for you.

So. I landed in long term care nursing... and despite my immense frustration during that period, I discovered two things: 1) I have a talent for education, and 2) I'm exceptional with families whose loved ones are dying. Where other nurses would shy away from end of life conversations, I found myself in the heart of it. I had a professor once who said that she wasn't afraid of "dirty" nursing and what she meant was dealing with people's difficult emotions in a time of crisis or going into "undesirable" locations: difficult neighborhoods, poor or dirty facilities, or sitting on the couch in someone's home you suspect might have bed bugs in order to put them at ease. I'm not afraid of dirty nursing (though I have been known to take my cloths off before I come into my house and throw them immediately into the wash.) I listened to the hospice nurses who came into my facilities. I learned from them, watched their interactions and realized that becoming a hospice nurse needed to happen now and not "later."

I've been a hospice nurse for 3 years (2 1/2 years out in a community and 6 months at a facility that specializes in acute care hospice) and every day I learn something new. I grow with each interaction I have with my patients and their families. I'm known in my community and company as being "compassionately honest." I'm authentic and real in my dealings with those under my care. When a patient looks at me, already knowing my answer, and asks, "am I going to die?" I answer quietly, honestly, with compassion, eye contact and a nod of the head. "Yes.Yes, you are." I am passionate about hospice. More, I'm passionate about people being allowed to die in a painless (as much as possible), agitation-anxiety free state. I am a patient advocate to the root of my core. I'm a defender of the under dog. I have no fear standing up to physicians or family members to fight for your care.

There are many misconceptions about hospice. First off, we don't kill people. That's illegal and we call it murder. There is such a thing as "assisted suicide" but to my knowledge, it's only legal in Oregon and is heavily regulated. Hospice does not "help you to die." We do not, to the best of our ability, over medicate. That said, we also do not prolong life. If you or your loved one's Plan of Care is "to live longer," then perhaps hospice is not where you need to be at this time. Most hospice care is done in the home, wherever home is, and not in a facility. Usually, hospice is not a place where people "go to die." And, not everyone who comes onto hospice will die. Yes, that's right, people do come onto hospice and get better. We call it "graduating" and there will be more on that later. The average patient is on hospice for 17 - 21 days, but that's the average. I've had patients who have been on hospice for hours and others who have been on hospice for four years... and as of the time of this blog post, some are still living. There is no set time frame. Everyone has their own journey. Finally, hospice is not home health. It does not offer 24/7 home care. We leave after our visit and it's up to the caregivers to continue providing care once we leave. If what you need or are looking for is additional help in the home then it's an option but it's usually an out-of-pocket expense. Let me state that again: hospice care does not place someone in your home 24/7 during this period. They are available to provide education and assistance but the ultimate care of your loved one lies in your hands or the hands of the facility where they reside.

So, what, exactly, is hospice? At it's core, it's about allowing the body to proceed along it's natural progression without interference or life-prolonging interventions while treating the symptoms that arise in order to provide comfort. We treat the patient holistically: body, mind (psyche) and spirit. If you hear the word "hospice" in the context of a conversation with your or your loved one's physician, it is because they (the physician), based on the natural and expected progression of the disease, have determined that your loved one has less than 6 months to live. That is not a prediction. Not one of us: not your hospice nurse, your hospice attending, your specialist or primary MD are psychic. While there are certain signs that could lead us to an educated guess, those don't generally appear until well into transitioning (there will be a later blog on this topic). We are all individuals in mind, spirit and body. If you think of it like an iceberg... there is what we can see, the symptoms: lack of appetite, increased sleep, decreased level of consciousness, increased confusion, decreased energy, etc., etc. They give us an idea of the disease prognosis and where we're at in the progression. But, the disease is larger than what we can see. If you pan down the scope, you realize that that iceberg may be relatively small on the surface and may have an equal size below said surface but it may also be large enough to sink the Titanic. Keep in mind, in hospice, we don't run tests. We don't check your blood levels (unless there is another reason, such as being on a medication that requires it or TPN (total parenteral nutrition)). We error on the side of non-invasive treatments and that of the original goal: allowing the body to proceed along it's natural progression while providing comfort. If that is not your goal, then it is not time for your to be on hospice.

Now you're on hospice, what does that mean? While some hospices are able to offer certain "benefits" of choosing them over another hospice, in all honesty, most of them are the same or similar enough that who your choose is less important than who your team is. Most of the team members (chaplains, nursing aides, social workers and nurses) in hospice have a calling. Like working on a burn unit (props to those nurses - I could never do it!) or something equally difficult, it requires a certain heart to do it. I have a hospice heart. I came to hospice believing that everyone, everyone, deserves a kind death. I get that there are very "bad" people out there who have made some extremely poor choices in life but that is not for me to judge. I'm an extremely good hospice nurse. I can help you get through this period of extreme difficulty, but you need to listen to what I have to say; just as it's vital I listen to what your goals are, where you come from and how you hope this last phase will play out. Not everyone likes me and I'm human. I have good days and bad days. But when I enter your home, I try everything in my power to make sure that you're the only thing I'm focused on. YOU are my priority. That said, keep in mind that I might have a high case load and when I walk out the door, you might not be the only thing I'm thinking about. And, sometimes my personality doesn't mesh with yours and "hearing" me will become difficult because I don't speak your language or in a way that you need me to. That's okay. While I believe that we're drawn together for a reason, in those situations, I want you to switch out myself (or another team member) because the end goal is a comfortable passing, not my ego. I want you to have someone who is able to help guide you through this time of need. Sometimes that person will be your nurse, sometimes it'll be your chaplain that you are able to really connect with and sometimes it's your social worker. Who doesn't matter, only that you're able to find that connection.

Your team. Generally, at least in my state, you are provided with a nurse (medicare requires one RN (registered nurse) visit every 14 days but most hospices provide for an RN visit each week at minimum) - the RN provides education, assesses wounds, manages medications/symptoms and provided emotional support; CNA (certified nursing aid) - assists with your activities of daily living (ADLs), which include bathing, medication reminders (they are not allowed to administer medications), assisting with dressing, making a bed, light housekeeping for the patient only, cooking light meals (if care beyond that is needed, then find out who on your team, often the social worker, can help you find those additional resources); social worker (SW) - this position is highly dependent on your state and even organization. I've worked for a company that requires their social workers to be licensed clinical social workers (LCSW), which means that they can provide emotional therapy and have been trained for it and another company who required a degree... any degree to be a SW. If that matters to you, ask when you are researching companies. Your social worker can provide emotional support to the patient and their loved ones; most often, however, they are available to help with community resources and navigating through the process, whatever the process might be. Finally, a chaplain is part of your team. Of the four team members, this is often the most "refused" visits. Many people have their own, deeply personal, spiritual beliefs and there is the fear that some religious person they don't know will come in and lecture or attempt to convert or save them. This is often not the case. The chaplains that I've worked with are non-denominational. They recognize that everyone has their own journey and are there simply for spiritual support. They can often help with end of life planning, such as mortuaries, and are the person the team turns to for special requests (such as you need the Sacrement of the Sick to be administered or really need that Native American Shaman to come speak with you). And, sometimes your team might include various volunteers who can come in the capacity of pet therapy, art therapy, Reiki therapy or a companion. 

That's it. That's your team. The visit schedule is highly dependent on the company that you choose. Beware of promises such as a daily visits from a nurse, CNA visits that last four hours or 24/7 care in the last days of a person's life. Those promises can rarely be met and are just lures to have you select their company.

*It is important to note that you will not have a hospice physician (and a visit to your primary care physician for something related to your hospice diagnosis may be considered "life sustaining" and go unpaid. If needed, check with your hospice company before proceeding with any physician visits) visit while on hospice. Your care is coordinated by an RN who then reports about your progress in weekly or bi-monthly meetings to an interdisciplinary team, which includes a physician. The team will offer suggestions in order to better manage your symptoms/care. When there are urgent changes, the RN will contact your attending to discuss those changes for alternations in your plan of care or to get new orders for medications, etc. Your case will be reviewed initially after 90 days, then in another 90 days and then following that every 60 days. If you remain "hospice appropriate" then your coverage continues and you remain on hospice. If not, you graduate, which is usually not a surprise to anyone. Remember that hospice can be revoked at any time for any reason by the patient or their family (if the patient cannot make their own decisions), and restarted at any time, provided they are hospice appropriate.

One final note, your hospice company should be paying for and providing for equipment such as a hospital bed (if needed), walker, wheelchair, wound care supplies if the wound is related to the hospice diagnosis, medications that are related to the diagnosis (all other medications will be covered either by your insurance or out-of-pocket if you choose to continue taking them), ADL supplies like adult diapers, wet wipes, and latex gloves. They do not cover making your house handicap accessible or provide that top of the line electric wheel chair you were hoping for.

This is just the Hospice 101 blog. Please remember that much of what I write about applies to the state where I practice nursing and is based on personal experience. Your state may be different. Ask good questions in order to get the best care for you or your loved one.

I'll be writing more later about more about topics such as: physical changes that can be expected: end of life appetite changes; life prolonging interventions such as g tubes, TPN, and artificial hydration; transitioning versus actively dying; a "bad" death; and advice to caregivers. If there is a specific topic you would really like me to touch on, please let me know. Stay tuned for more...


Quick "thank you" to my beautiful friend, Yanna, who has had to listen to me talk about my passion regarding death and dying more times than I'd care to count. Thanks for inspiring me to take all I've learned and put it onto paper.

Scotland Bound

"Ergo, due to the transitive property of awesomeness, if you avoid anything that could potentially embarrass you, then you will never end up doing something that feels important." - Mark Manson (from "7 Strange Questions That Help You Find Your Life Purpose")

With fear, the significant risk of embarrassment and no small amount of nerves, I'm officially announcing that I'm moving to Scotland in 2015.

There is much I don't know and that still needs to be determined as I venture forth on this new adventure. Things such as: where, when and exactly how plus all the other minute details. But, I'm ready and very excited at the prospect of living overseas, and experiencing something different and watching how it changes and shapes me, while taking amazing photographs of the Scottish countryside, of course.

I've come to a number of significant conclusions recently. 1) I'm not living the life that I'd imagined and it's time to start doing so. 2) What I want MOST to do in this world is travel, with a close second being: make a difference in the lives of others.  I get the honor of doing the latter through being a hospice nurse (stay tuned for blogs about what I've learned from death and the dying). What I don't get to do much of is travel, for various reasons. 3) There are a number of items on my bucket list that would be much more readily achieved by being closer to Europe. 4) What scares me most, is, perhaps, the thing that I'd find most fulfilling. I don't know for sure. But I desperately want to see if it does; so I'm putting on my Big Girl Pants and taking the leap. Fingers crossed there is a net available to catch me.

I've had many who've asked "why Scotland?" While there are many reasons, the first and probably most important response is "why not Scotland??"

So... Scotland.

About 20 years ago, I read a fantastic book called "Outlander" by Diana Gabaldon and fell madly in love with Jamie Fraser (a.k.a. James Alexander Malcolm McKenzie Fraser) and Scotland. YES, I KNOW that he's fictional. I KNOW that it's not possible to travel through time. I KNOW that Sam Heughan is a god and this mere mortal cannot live in the Land of Gods (nor does she want to.) So, for those who have recently questioned my sanity (apparently many years of friendship has led them to believe that I'm delusional), I. Am. Fully. Rational.

Recently "Outlander" has been made into a TV series on Starz, and it's made me think... and remember. It's made me recall all that I was passionate about in my teens and early 20's, when I still thought I could do ANYTHING I wanted; when I still had enough passion for 10 people and defined success not by how much money I made or how high on the ladder I climbed or by living up to other people's expectations. I defined success as living an adventurous life. My dream as a young woman was to be an actress (in fact, I was accepted to NYU Tish School of the Arts). But, and it's a big "but" -  I could care less about acting on Broadway. What I REALLY wanted to do was be in traveling Broadway shows. The acting and creative process would have been great but I wanted to see the world!! I wanted to experience other cultures and explore other cities. I wanted to sit in pubs and strike up conversations with strangers. It's been a longing that I've had for the last 20 years. While I've been mildly successful at being able to stuff it into the tiny corners of my psyche, at times it will rear back up and body slam me into longing and desire. In retrospect, some of my desired nursing jobs were "travel nursing" and "Doctors Without Borders" work. One of the first things I did after getting my license was to sign up for emergency response teams in foreign countries. I was never called but clearly, the desire to explore hasn't left me.

Scotland specifically: I love the people and their passion (yes, I've been there). The country is gorgeous. I speak the language, sort of. :) And, it's likely that I can work over there as a nurse (vital to survival). And biggest bonus of all: men in kilts!

So... here I go. I'm starting a journey that will lead to many grand and new adventures... Watch and see as everything plays out. I'd appreciate comments and advice from those who have left stateside to become an ex-pat.

That Inner Critic

So I bought a new camera yesterday.

I've been on a quest recently to rediscover who I am and who I want to be in the future. Part of that quest has led me to photography. I've always loved to take photos but since the advent of the mobile phone, it's been too easy to just point and shoot, with little thought to what I'm taking a photo of. The result is that I have hundreds (literally) of mediocre photos that clog my drive space. Honestly, it has allowed me to be lazy. Recently I keep hearing a voice (not a literal voice) that is urging me to start taking photos again. For about 15 years I've longed for a really nice camera; one where I can add a different lens and play with filters and lighting. It took my breath away at the expense, but I did it. I bought a camera and that inspired me to get out and take photos.

 It's been difficult to take time for me lately. I've either not given myself permission or I've simply been too busy. This morning I stopped the madness. I put my puppies in their crate (I try not to do that on my days off) and went to my favorite local park. It has rained for the last number of days and I wanted to try to capture images of water on plants.


It was eye-opening how my inner critic immediately jumped to the forefront to remind me that I'm just an amateur, "no one will ever buy your stuff," "they can do the same thing themselves if they have a good camera." I was a bit shocked because while I wouldn't mind becoming good enough to have my photos hanging on people's walls, it wasn't really the focus. My inner critic was desperately attempting to get me to give up and stop before I'd even attempted. It was difficult, but I shut that know-it-all up. I told myself that it doesn't matter if anyone likes my photography because it's about representing what I see... what my vision is and figuring out how to bring it into still life. I told myself that the one area where I'm truly patient with my own process is when I'm trying to frame the "perfect" shot or capture an image just right. Because of those two things, I'm not going to stop. You, my fantastic reader, will be forced to view what I find out there to capture in image.

Once shut-up, here is what I was able to capture...

The following are untouched.

 Needless to say, I LOVE my new camera!! That inner critic be damned!

Missing

I am missing. 

I have been missing for a long time. No one seems to realize that I'm gone. My image does not appear on a milk carton; nor is it on a flier taped to a shop window with a date indicating when I was last seen. No one is looking for me.

You might ask when I first disappeared. I cannot say for sure. I believe it to have been a gradual thing. At some point I decided to explore a path looking for a Grand New Adventure and, well, with one thing leading to another, I have wandered too far. Taken too many wrong turns. I no longer know where I am. Why I am here.

Who I am. 

I look in the mirror and I don't know that face. I squint, wondering if the distorted image will morph into something I recognize. I smile, baring teeth, the top lip slightly bigger than the lower, but that is only noticeable when I don't smile. A hint of dimples that I'd hoped would deepen, but didn't. I smile bigger and lean forward to stare into eyes so dark there appear to be no pupils. There is such sadness that lives there. So easily missed by the smile. Are those my eyes? Have they always been this way?

I look around me and think, "this is not my beautiful life." This world I have created around me is so far from what I had imaged. And I think, "I am missing. I have lost my way. Who am I? Where do I go next?"