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.

Dealing with Alzheimer's

A good friend of mine inspired me to write this blog post.

One day my friend and I were hiking and he was talking about his mom who has started to show signs of dementia. I work with people who have Alzheimer's (Alzheimer's is a specific form of dementia, which by the way, is not a normal aging process) on a daily basis and I believe that I approach them in a unique way that helps to keep them calm while allowing me to provide the care they need. I was walking through the disease process with him when I happened to mention that I thought the kindest thing a person or family member could do for someone with Alzheimer's is to recognize the point where "reorientation" was no longer appropriate or helpful.

Reorientation is a term we (healthcare professionals) use to describe the process of helping the patient orient to reality. It may be a simple reminder of where they are, what the date is or even what time it is. As Alzheimer's progresses, reorienting simply becomes stressful and the person starts to feel paranoid. Their reality has changed. In those instances, it becomes time to go where they go. I have the benefit of having been involved in the theatre. Improvisation is second nature to me. That said, although I know it's incredibly frustrating and painful for family to see their loved one in such a altered state, going where they are is the kindest thing to do for everyone.

A little story (or two):

We have a resident were I work who spent much of his life working as a security guard. He has reached a point where he now thinks that he is working security for a hotel and that he has a room there. Instead of reorienting him, which wouldn't be helpful and only confusing, when he comes up to ask if he's on shift, depending on what I'd heard in report, I'll usually ask him if he's eaten because it's break time and I don't want him to miss his meal. If he'd been up "patrolling" all night, then I suggest that he go and get a nap because he's "on shift" later that night and we don't want him to miss his sleep. I'm able to manage his care by going where he is and using his experience to make sure that his needs are met.

We had another resident that was very, very proper. She liked manners. So, I called her Miss Eve (name has been changed for privacy). She was very paranoid and didn't like people to touch her. So, instead of just coming up and shoving her meds in her mouth, I would kneel down so that I was eye-to-eye with her and say in an enthusiastic tone of voice, "Hello, Miss Eve, how are you this morning?" I would have a quick dialogue with her and because I'd spoken to her and discovered what she likes, I knew she loved applesauce. So I'd put her crushed meds in that. Because I also knew she liked manners, I knew she wouldn't refuse me if I told her that I'd specifically made the applesauce for her. Getting her to take meds was... simple. When she was no longer able to swallow effectively and her meds were put into a gel, I told her that her skin was very dry and that I wanted to put lotion on her. Whereas other staff really struggled giving her care, I never once had an issue. Because I would go where she was and offer what she was familiar with. No stress for either of us.

These basic things have helped me to have a relatively stress free interaction with those who have some sort of memory impairment.

1. Have patience. Their thought process is slower than ours. If you think of memory like a file cabinet, we all store our memories (everything from words to the first time we saw Santa) within the cabinets, in their own, perfectly labeled files. And, if you're like me, then they're all nicely color coded with a neatly typed label. We are able to access these memories, for the most part, with quick accuracy that doesn't hinder our interactions. When someone has a memory impairment, it's like ALL of their files where tossed into the air. Some of them were put back in the correct file but others weren't and some files are now empty. It takes time for them to access those memories. It's not helpful when we attempt to complete their sentences or express frustration. They're frustrated, too. What helps is to use short sentences. Ask "yes" or "no" questions. Express one thought at a time. Use pauses in order to let them catch up. Sit quietly while they find the words. If you don't understand them, ask the same question... don't try to rephrase it, that only confuses them more because they think you're asking a different question.
2. You don't need to be right. Being correct is unnecessary and you can't win... because their reality is not your reality. When you deny their reality, it creates paranoia, greater confusion and anxiety.
3. Go where they are. If they think that you're their great grandmother... then be their great grandmother. What harm does it cause? None. And it provides them with a companionship that is familiar and comforting to them.
4. Remember that Alzheimer's has stages and that each of those stages must be approached in a different manner. The person may not behave in a way that you are familiar with. They may not seem like the person that you love. But they cannot help their behavior. Some wander, unable to sit still. Some cuss or become overly sexually inappropriate. Remember that this is a stage and will eventually pass. 

Watching a loved one go through the changes of Alzheimer's can be very, very painful and exhausting. If you're a caregiver... find support (other family members, a professional support group, church, etc.) because it's not easy and caregiver fatigue is common. You're also really, really amazing for making the commitment (and it's definitely a commitment) caring for your loved one. If you find that it's too much, please don't suffer guilt. It's exhausting work. And there are wonderful facilities that can care for your loved one... just do your research.

If wish you every luck and my heart goes out to you.

**For more information about Alzheimer's and dementia, please click on the link above.