Original work by Joana Roja

The grandest, greatest, most pervasive mystery we face is the big “what happens after we die.”  Entire faith systems, rituals, and cultures have evolved from this question because, we, the self-aware, sentient beings that we are, are able to take a step back and wonder.

And worry.

In American culture, generally, we tend to cope with this question by avoiding the discussion of dying.  We know about birthin’ babies.  We know about healthy (and unhealthy) lifestyle choices.  We know to go to the doctor and how often and when (whether we do or not and the why of these choices, that’s a different discussion).

But dying?

We don’t talk about it.

The first thing I wind up doing when I assume care for a person and their family is educating them on the dying process.  So I thought I’d capture it here.

First thing first.  Dying is a natural process.  Our bodies know what to do.  Barring trauma, such as a car accident, we all die pretty much the same way, regardless of the terminal disease taking our life.

Dying happens when our bodies can no longer maintain something called homeostasis, a balance between the many different needs and systems that keeps us up and running and able to hit the snooze bar in the morning.  When a serious illness arises, the body compensates for the lack of support in that area.  When an illness becomes terminal, the parts of the body that had been healthy and working overtime to pitch in are breaking down.  It can get complicated.  There may be multiple disease processes happening at the same time.  Sometimes there isn’t any one terminal diagnosis, but there is enough disease in various body systems that, when taken together, the body is unable to thrive.  To compensate.

Dying is failure to compensate.

When we know that a person has a terminal diagnosis that no longer can be helped with curative treatment, that’s when hospice begins.  The focus shifts from curative to palliative.  Medicine can no longer fix or address the cause.  Medicine now attends to the symptoms and ensuring that the person remains as comfortable as humanely possible.

The course is different, but there’s a certain point where dying begins to look more or less the same.  In hospice, it’s called “transition”.  If the person is still awake, it can observed as a withdrawal of attention, a more internal focus.  The person might start plucking at her clothes or sheets, what we call “picking”.  Hallucinations can occur, secondary to lack of oxygen reaching the brain and acid-base imbalance as well as electrolyte imbalances.  They grow more lethargic, their appetite diminishes or disappears entirely.  They can can feel euphoric or spacey or confused.

At some point, the person goes to sleep.  They become minimally to nonresponsive.  Every time.

As the dying process becomes active, the brain hoards the blood for the vital organs, the heart and lungs.  Typically, I’ve seen people go one of two ways at this point.  Some will experience cold extremities as a result of the blood being preserved for the heart and lungs, and what looks like bruising – called mottling – as a result where the blood in the limbs pools.  Some will spike a fever that can go quite high and they’re bodies stay nice and warm as a result.  I have yet to decide if one way is better than the other.

Urinary output is scant to none.  Bowel movements may still occur as we continue to break down cell material to the very end.

Probably the most notable change, other than the change in consciousness, is that the person’s breathing changes.  The swallowing reflex disappears and saliva can and often does pool in the throat.  This can cause a gurgling sound as air moves through the fluid, and can be disturbing for family members to hear.  The breathing itself grows more rapid and shallow, can change to rapid and deep, then stop for a period of time before resuming.  This is called Cheyne-Stokes breathing.

The heart rate becomes rapid, and often irregular, the blood pressure falls, and at some point, the heart and the lungs, they stop.  And the person dies.

So, knowing this, where does hospice come in?

For however long the person is on hospice, from the moment they know they have a disease for which there is no longer any curative treatment wanted and/or available, we take over medical care in the home.  We coordinate with the person’s primary care physician if desired, our hospice physicians, facility caregivers if appropriate, the family and the patient.  The person’s goals become our goals.  We continue to palliate and manage whatever medical issues the person has while keeping them as comfortable as possible and fostering independence and quality of life with what life remains.

We provide emotional, mental and spiritual support for not just the person, but the person’s family.  We teach them what to expect.  We answer a lot of questions and ask for more.  We can’t fix a lifetime of patterns when they show up, but we can and do get people into the same room so that they can communicate.

When transition occurs, we watch and wait for pain, for anxiety.  We look for issues with respiratory distress and air hunger.  We palliate these and the gurgling with medications and at that point, all other medications that remain are usually discontinued.

The first drug is morphine.  We administer it in liquid form and it’s given orally, absorbed via the mucus membranes of the mouth.  Morphine serves two purposes:  pain management and palliating respiratory distress.  Most people are familiar with the former, many are surprised at the latter.  Morphine acts on the respiratory center of the brain, reducing the respiratory drive and slowing those rapid respirations that often occur at the end.  Morphine is also a vasodilator, meaning it opens up the blood vessels, allowing blood to flow more easily and reducing the workload of the heart, allowing it to slow down.

The next drug is lorazepam (aka Ativan).  It’s given in tablet form that dissolves in the mouth, again absorbed by the mucus membranes.  This is a benzodiazepene and used most often as an anxiolytic.  It also helps with the sensation of air hunger, or shortness of breath, by relaxing the person.  We give this to palliate the stress the body is feeling as it starts to truly decompensate.

The last drug is atropine drops.  This is a medication more commonly known as an eye drop.  At end of life, it’s given as drops under the tongue to dry up the saliva that pools in the throat and reduce the gurgling sound.

When a person is no longer able to speak for herself, it’s up to the nurse – and the family – to gauge discomfort and pain by non-verbal signs.  The nurse educates the family if appropriate.  The medications are titrated to comfort.  We may also use oxygen, and we may give Tylenol as a suppository if they spike a fever (it’s uncomfortable to feel too warm).

Non medicinal interventions are used.  A fan blowing across a person’s face can reduce the sensation of shortness of breath.  Cool cloths on the forehead, blankets over the hands and feet.  Music, the sounds and conversation of familiar voices – it’s presumed that hearing is the one sense preserved to the end.

The goal is a natural death, a comfortable, natural death.

The family’s role is to keep vigil.  To watch and wait and pay witness, to be alert for pain or discomfort and get help when necessary.  I’ve seen solemn families, I’ve seen laughing families, I’ve seen one daughter who turned her mother’s death into a celebration, setting up a butterfly altar on her overbed tray and calling out, “Look!  There she goes!” when the moment came.

If I – we – do our jobs right, there is no mystery about dying by the time the person is in thick of it.  The family knows what to expect, they’re prepared, and some times, they even celebrate the passing.

What comes next, though… who knows?

From Otis Historical Archives.

From the moment I started nursing school, I became part of a long line of mentorship.  Each instructor strove not to only impart nursing skills and clinical judgment, ethics and leadership, critical thinking and competent confidence, but to share stories.  Stories of mistakes, stories of successes, stories of tricks of the trade that aren’t found in any book.  Each preceptor did the same, a working partner to serve as mentor and act as a rich reservoir of learning.  Each preceptor has added to the formation of my own nursing practice.  Without fail, each mentor has been immensely generous with her time and knowledge and support and feedback.

Nursing is as much an art as it is a science. A new nurse can have a gut feeling about something.  An experienced nurse knows when to trust that gut feeling.  As a new nurse, I rely on the experienced nurse to test my own gut.  And each time, I add weight to trusting my own clinical judgment.

Now that I’m actively working as a nurse, the mentorship I’m experiencing has a different tone.  We’re colleagues, and my focus and goals are the same as hers.  There’s an urgency to it, mostly because she’s going on maternity leave.  I’m transitioning to a new mentor, but she’ll be more of a sounding board at this point, her and the NP there to back me up when I need it as I start to see patients on my own.  I have no idea if she realizes just how meaningful its been for me, and I’m not sure I can adequately communicate it, or if I even should.  It’s part of the tradition of nursing.  Pass on the torch, share the light, make it a little brighter, knowing what you shared will in turn be shared with another nurse.

Now, at two weeks in, I have had the odd and unfamiliar experience of acting as teacher to another RN at a facility, modeling my own learning, communicating my own advice in response to her seeking it.

It’s disconcerting as hell.  And exhilarating.  This is me, passing it on.  I hear the words of these mentors of mine come from my own lips, the education and training too, yes, but the ART of nursing, that way of communicating that comes from that gut-level trust, somehow it’s me wielding the brush instead of being the canvas.

It’s scary.  And kinda awesome.

Hygeia. On the pharmacy building in Olomouc.

I’m going to get a bit evangelical about hospice. Not just because it’s where I’ve chosen to work, but because I truly believe it’s the sane, humane, responsible, and truly caring way for each of us to die, should we have the time and opportunity for it.

First, I want to try to dispel some general assumptions:

We have to be actively dying to qualify for hospice.

Not true. Hospice is covered once a person has been given a terminal diagnosis and ceases actively seeking treatment. States vary in the details of how to certify a terminal diagnosis, but very generally, six months to live is a pretty fair assumption. And even that is only the starting point, since hospice patients go through re-certification periods which can continue for years so long as there is continued decline.

Hospice costs me money.

Nope. Once qualified, hospice is free. FREE. Medicare covers the whole shebang. An interdisciplinary team (Physician/Nurse Practitioner, Registered Nurse, Social Work, Hospice Aide, Chaplain, Volunteer, and if the specific hospice in question offers it, Complimentary Alternative Therapies), Durable Medical Equipment and medications related to the terminal diagnosis are fully covered. Hospices are 24/7 and the team goes to the home, be it personal living space, an adult foster care, a skilled nursing facility, or assisted living.

I have to use whatever hospice is related to my health plan.

Nu-uh. Medicare coverage means that we can use any hospice we want. Our normal health insurance, if we have it, is good if we want to keep taking medications that aren’t related to the terminal diagnosis but hospice itself is unrelated. We have as many choices as there are hospices, and are only restricted by distance and availability. Some hospices have waiting lists, some, like the one where I work, have a policy of never turning away a referral. Some offer CAM therapies, some may not have those readily available.

Hospice is about hastening my death.

No, no, no. In hospice, the nursing goals DO change. The primary goals are about comfort, about treating the symptoms, not the underlying disease or condition itself. Pain/discomfort. Nausea. Restlessness. Anxiety. Mental and spiritual distress. Hospice provides for not just the patient, but the caregivers as well. The family is integrated into hospice, and receives the same opportunities to receive care from the hospice team, particularly when it comes to the non-physical needs.

The truth is, we all die. All of us. And rather than pretend this inevitability doesn’t exist, hospice opens the black box and deals with it directly. Hospice attempts to remove the fear, ally the anxiety of the unknown, and to ease the ravages that come with the body doing what it’s meant to do.

Not everyone wants hospice. Some want to fight to the end, with machines and tubes and pumps and paddles and the beep beep beep of the monitors. Hospice, though, provides a choice to each of us.

We all die. What is needed for each of us to have a good death?

Pixelated Red Cross nurse.

Geek to nurse. That’s me, although it’s not as cut and dried as all that. For twenty-odd years, I worked with computers for a living, making pixels line up to form pretty pictures, for marketing, for social networking, for communication.

Eight years ago I embarked on a slow journey to switch professions, from Bay Area web geek to registered nurse. It took time. I had no existing degree and needed to patch up the holes of my previous college experience. I worked part time, learned during the rest, savored the enduring support of my husband. I waited to get into nursing school – two years of it, attending lotteries every semester. Once in, the wait was over – nursing school was a whirlwind of intensity. I felt like I was learning through my eyes and ears, through my pores, the proverbial sponge.

During this time, my father passed away from cancer, and my mother was diagnosed with her own. She battled on and maintained her faith in me, that I would be the best nurse I could possibly be. I graduated at the end of 2009, missing my dad, swimming in the love of my husband, my mom, and our friends, ready to take the NCLEX and put my new license into use.

And the economy took a nosedive. New graduate nurses, all dedicated like me, all earnest like me, all hungry for work, like me, we flooded the marketplace. Nearly retired nurses came back to work. Soon to retire nurses, didn’t. Hospitals consolidated, invoked hiring freezes, or hired in-house only. Layoffs happened. Are still happening.

The nursing shortage exists. And at the same time, it is nearly impossible to find work as a new-graduate nurse.

I revised my plan to work and then continue with an RN to BSN program, going straight for the BSN instead through an online program. My mother’s battle with cancer deepened, grew more desperate, and I spent more of my life in the Midwest at her side. She passed mid-2011, at home, with the help of a Michigan hospice.

Things started to settle. My husband and I tackled a long held plan to move to the Pacific Northwest, to Portland, Oregon, to buy a home there and settle in with deep roots. He was, is, finishing up his own next step in education, a Masters in Fine Arts, poised to graduate in a few weeks.

I started volunteering for a local hospice. I continued my standard approach to applications – figure out the hospital job website, fill in the many form fields, create a profile, apply for the jobs that require experience because that’s all there is, and pray to be noticed amidst the many other hopefuls. And at last it became unnecessary because the hospice asked me to interview when they had an opening.

I started a few weeks ago, orienting as a Hospice RN/Case Manager. The job so far… I keep searching for the right way to describe how I feel in this work, and I think the best phrase I can choose is “heart-opening”.

I’m truly blessed to have found this work. And that’s what’s triggered me beginning this blog. I want to share the moments and lessons and experiences with the most impact on my practice and growth as a nurse and as a human being. I want to pass it on to the other nurses out there, of all levels of experience and training, and to those who might be thinking of working in hospice.

Thanks for reading.