A Hospice Nurse Perspective
I’m not a writer by trade or anything resembling one, I don’t even play one on the internet. I’m a nurse with a few decades of experience who specializes in hospice and palliative care, the fact that I was once an English major is just an annoying bonus. I can go on at length about a variety of professionally related subjects that I’m sure are very interesting like nursing shortages, vaccine uptake in the population, propagandized health and sciences information, Sarah Palin talking shit about my death panel, physician-assisted death, bioethics and the like, I’m just not up for all of that most of the time and I’m generally not interested in writing long rambling screeds about upsetting political issues. Maybe I’m overthinking this but that sounds like a capital Bad Idea.
Many people have the wrong idea about what I do, focusing entirely on the act of death itself rather than where our work actually lies. A common misconception about me and people like me is that we are involved in your medical care to help you die and nothing could be further from the truth. We are not here to help you die at all, people don’t really need help dying, they already have that covered long before they meet me and no one meets me unless they have a really good reason. We do not shorten the life span and we do not lengthen it — I know that there are some that don’t believe this statement but it is absolutely true. Think about it: why would I want you to die faster? Forget about the ethics of the idea, think of it from a purely mercenary standpoint. I get paid by the hour and dead patients profit me nothing, they need no further assistance. I don’t get paid to not see people. Even if I didn’t care about the people I work with (I assure you I most certainly do, even that one late member of the Manson family I got to know) it still wouldn’t make any sense. No, I’m here to help you live a little better, whatever that takes, despite the terrible problems you have or will have in the near future.
“I don’t know how you all do this, you are very special people” is a common statement often uttered with a sense of awe from others and I understand this sentiment, it’s very kind, but I do not see myself as “special” in any way professionally or personally — I’m just a nurse with a different job and philosophical attitude. Maybe there is some measure of special psychic constitution necessary to constantly see people out in the community who are so sick they don’t bother going to the hospital anymore, I don’t know. I long ago lost count of the number of dead bodies I’ve seen and the lamentations I’ve witnessed. I remember how it felt when I realized I couldn’t remember them anymore, their faces and names escaping me, running together in the endless stream of new cases, new suffering, new encounters with Death by the hundred, even the younger ones. I’ll tell you it didn’t feel good, it prompted a lot of prayer and contemplation. The fact is none of that really matters, what matters is the perspective on that thing that everyone fears, that terrifying instant in which consciousness is sundered that can happen to any living thing at any time.
Death, defined, is the catastrophic interruption of the human body’s negative feedback loops. If you are at all acquainted with anatomy and physiology you have heard much of negative feedback loops, because there are a lot of them and they regulate the sometimes delicate chemical dance required to keep you alive. Death is not an instantaneous process most of the time, if it was no one would need me. Sudden or accidental death is one thing but death as the end result of chronic illness, that is an illness that is not expected to be cured in any meaningful way, is quite another and the human body can take a lot more punishment than you might think. We are not as fragile as we like to think, there’s a lot of redundancy built into that weird bag of water and salt you inhabit. We identify several stages when caring for patients with terminal end-stage disease:
- General hospice care: The patient is in terminal state, with or without symptoms-symptoms are whatever you’re feeling, painful, nauseated, anxious, etc, symptom management and education are ongoing activities. The nurse and other involved clinicians, always a social worker involved and hopefully a chaplain, visit and assess the patient routinely, intervening as necessary. Other disciplines are also commonly involved like musicians, massage or acupuncture. Support is given to families and other caregivers, addressing the three primary areas of suffering body (medicine/nursing), mind (psychosocial) and spirit (chaplaincy). Care tasks trained and clarified, medications adjusted, stopped and started as indicated.
- Transitional state: At some point there is a change, and it can be somewhat subtle. One of the more common signs is what we refer to as the “withdrawn affect” which is to say that the person has withdrawn from social contact and activities. The main thing here is that there is a definite and noticeable change of some kind heralding a transition to a new state. The patient may stare at you when you ask a question and may or may not answer, seeming distant or inward-looking. They often have trouble with or just stop eating and drinking. They often have some hallucinations, usually as mild as seeing pets and kids running around, visions of family and friends who have already passed on are also very common, but can advance to severe behavioral issues, insomnia, screaming, dangerous scary hallucinations, you name it. They may complain more of pain as their usual coping mechanisms, if any, say their final goodbyes. Even those normal aches and pains associated with arthritis that pretty much everyone develops as they get older are no longer feel so mild and easy to ignore. The transition is time limited and can last hours to a couple of weeks or so. Some people can drift in and out of this state especially with more indolent diseases with a long slow period of decline.
- Active dying: The person has lapsed into a coma and is no longer responsive to any stimuli. As the body lapses into a state of shock all energy starts to become focused on the core. Purplish discoloration or mottling can sometimes be seen in the extremities. Changes in the brain lead to changes in breathing patterns, often with periods of apnea. This state usually doesn’t last long but there really isn’t a good time frame, it can last minutes, hours, days, or in extreme cases many weeks. Medications are continued for respiratory comfort and to cover for pain because the person can’t tell you how they’re feeling anymore. The “Death Rattle” is present with some but not all patients, our term for this is “terminal secretions” and it can be very ugly to see, with no medicine being effective at all when it is profound, only positioning the patient to keep the airway open as the fluid backup drains from the lungs. There may be a brief but noticeable period of more distressed breathing immediately before the cessation of breath and end of life.
This is the objective view of the process of Death by Natural Causes in plain English. The encounter with death involves all parties and its dynamic is interconnected, the nurse with the patient, the nurse with the illness and its symptoms, the patient with the illness, the patient and the family, etc etc. All of those interwoven subjective experiences are happening all at once as we approach the crescendo of death and move into the coda of bereavement. I describe it here in this way to illustrate not that I am an unfeeling automaton, but to show that there is a particular series of events and stages that happens, taking the time it needs, all people dying a little bit differently and all of them a little bit the same. The nurse is just one participant in the cycle, an important one but not the focus — it isn’t about us at all. There are variables but this process is generally universal regardless of terminal diagnosis, age, sex, race or any other arbitrary category.
It can be hard, but I would say that it isn’t always hard. The corporate life review as family or other caregivers come together and share their memories, loving each other, the commitment to their loved ones becoming stronger, these are things very few people outside the immediate family get to see. They, too, find perspective in time though this can sometimes take a while and not attained until the patient is gone and the encounter with death has lost a bit of its sting. Mourning is subjective, and there is no wrong thing to do. Many weep, or howl, some just shut down, and all of those things are OK. One needs time, just as death itself needs its time.
In my last post I talked about the tarot card called Cruelty (Nine of Swords), and in that section I bring up a term the people of hospice use a lot: suffering. Suffering is more than just pain, it is a total person problem, body, mind and spirit. A person with an advanced disease has had everything taken away from them: socialization, family, spiritual community, mental faculties, control of their body processes, material wealth, independent agency, and so much more. I think one of the most devastating losses for many people, especially men, is the loss of driving privileges and I invite you to try to reason with them about it. This is what suffering is: the systematic loss of control over every part of a precious life reaching its inevitable limit. It is in Death that we might think that God is cruel, and perhaps from a certain point of view that is true. Much of the suffering I see can be seen as a cruelty but I rather think that the Divine transcends it, even as cruelty itself is part of Creation.
How then, shall I see Death as terrible? Suffering is inevitable, none escape it. We mourn, we will never see these beloved people again, but we also understand at the end of it all that it was necessary. Death was the only true release from what became the prison of their body and their suffering is no more. There is no more of pain, of breathlessness, of fear or confusion in them now. They have transcended the vessel of their physical form, and we are left to keep it in stewardship per our traditions out of respect for that precious life. Death is tragic. It is final. The dead are gone from everything but memory and the tokens we keep of their physical presence to remind us of our love for them. It will not be denied, the awful specter we have hanging over our head for the entirety of our existence, reminded of it daily on a subconscious level every time we walk with Death’s little sister: Sleep. It is understandably feared, but it is also to be accepted and at times, even welcomed.
In addition, since this is my space, there is obviously going to be a card.
Obviously:
Key 13: Death or Lord of the Gates of Death
Scorpio’s card, Mars rules, Hebrew letter Nun נ “Fish”
Path 24 between Tiphareth (6 “Beauty”) and Netzach (7 “Victory”) in the Sepher Yetzirah “the Imaginative Intelligence, and it is so called because it gives a likeness to all the similitudes, which are created in like manner similar to its harmonious elegancies”
The skeletal figure wildly swinging his scythe is standard imagery, widely known for its divinatory properties as being a “good” card despite its looks, much like #15 The Devil. The card really is about death, just not the way we think. Scorpio is a water sign, its holy letter Nun means Fish and its ruling planet is Mars, the god of war whose bounty is Death. The bounty of the Water feeds the body and is holy thereby, but recall the old ways of agriculture: burying old fish in the ground with seed to make the corn grow tall, the most natural fertilizer there is. Death brings with it the ability to create new life through what it kills, an act of ever-changing creation that begins and ends with its decay, feeding the Earth and its growing children like and unlike according to its own time. Terrifying in its majestic cycle, and the price of our earthly existence.
Blessings תִּפְאֶרֶת
Originally published at https://dissidenttower.substack.com on June 9, 2022.
