NurseDeltaInk

Here's a pill. And here's a pill to counteract the side effects of the first one...and so on....when I handed an elder a 30cc cup filled to the top of mostly pharmaceuticals, I choked along with them as they attempted to swallow them, day after day. It's one of the reasons it is documented that people who go on hospice (early admissions) get BETTER for a few months. So many meds are reduced in strength or DCd upon admission and they go on a permanent drug holiday to their benefit. We need to advocate for our elders. Great article.

yes, I feel powerless when I see this happen. It's their last human experience and, for some, it seems to be an immense struggle. I have my own ideas about why this happens for some. I saw it a lot with men especially. Like your quote says...sometimes He lets the storm rage... so all we can do is just be present with the sacred art of calm witnessing and hold space.

Oh, how I remember those days! Everyone who is NOT a nurse always seems to envy our schedules. But it can be super hard to work 2, off 1, work 1, off 3...etc. It leaves the body confused and our minds and spirit reeling! This is one reason I job-hopped a bit between shift work and home care positions (8-5,M-F). It allowed me to enjoy the 'pros' and when I could no longer find that enjoyment (and only saw the 'cons') I would switch it up. Great article! And thank you for working NICU, a role outside of my personal comfort zone and so needed!

I love that my use of words touched your heart. What I left out of the article were all the experiences I can't quantify. It's often a very spiritual experience being in the room with the dying. I can feel the gates opening so they might step through. I am forever grateful to be present for such an intimate and human journey.

Thank you for the read and comment. Let me take a moment to address your inquiry as I did just drop that in my article without explanation. First, the medical specialties of birthing and dying both require the skillful application of pain management. Also, other comfort measures are appropriate here as well such as management of n/v, positioning, and intake monitoring. Nursing also seeks to normalize the process for all involved, educating them about what they are going through or seeing. These are just a few commonalities off the top of my head. For some folx, birthing and dying goals encompass the goal of making the process as non-medical as possible for both the person and those with them at the bedside. And finally, on a more esoteric, personal note, birth and death can be seen as poignant, spiritual transition times, a midwifing of the soul either way. Hope this clarifies my statement further for you. Be well.

yes! It seems hospices are having one of two responses: 1. Great! patients/families can use all the help we can collectively provide them. 2. Nope! You are in OUR territory. Getting the word out for hospice providers is paramount right now. The main thing death doulas provide is the gift of TIME as well as reinforcement of hospice education when they are not in the home. As far as hospital placement (whether it's hospital hiring or private pay via the family), it is pretty exciting to think that a death doula could provide extra support for nursing staff. For example, observing increased agitation in the patient and alerting the nurse in a timely fashion ...being an extra pair of eyes so to speak. Or educating and assuring family at the bedside about what they are seeing as being a normal part of the dying process thus, helping to support everyone emotionally and spiritually. Nurses would do this more if we had the time, right?! Thanks for the read and the comment!

Backstory When the Western counter-culture of the 1960s sought to radically protest dominant societal paradigms on so many fronts, the over-medicalization of the birthing process was included. Home births attended by "direct-entry" or "lay" midwives saw a resurgence that continues today. From the home birth movement, the non-medical birth doula role evolved concurrently and is now a common part of the hospital birthing team1. As birth and death care are often seen as having commonalities, the high emphasis on death as being a medical event was challenged in the 60s as well. It was then that the heart of hospice was born. Dame Cicely Saunders brought the formalized model of hospice care to the U.S. in 19632. Hospice home care and in-patient units continue to remind us that the death process can be a normal and comfortable process when attended by compassionate, well-trained medical providers. Over time, an astute birth doula put two and two together. When Phyllis Farley attended an End-of-Life seminar at a Jewish center in NYC in 1998, it led to the creation of a death doula services program in 2001 at a New York City hospital and, soon after, a death doula training program3. By 2010, this bedside death supporter role began to flourish via hybrid and internet training courses, teaching the same four pillars of support as birth doulas: emotional, physical, advocacy, and informational. History in the Making In 2018, the National Hospice and Palliative Care Organization (NHPCO) embraced the End-of-Life doula (EOLD) as a legitimate, non-skilled care role in hospice care with the advent of their EOLD advisory council4. This continues to pave the way for standardized certification for death doulas. Certified death doulas are seen by some as the perfect fit to assist in providing death with dignity when medical interventions are no longer appropriate. The quasi-professional role is rapidly becoming mainstream in the wake of increased death awareness brought upon us all by the devastation of the pandemic. And now, death doulas seem to be quite a trendy topic and newsworthy as well, according to the BBC, Huff Post, the New York Times, and Time magazine5. Nurses and Death Doulas May Meet Soon The continuous bedside support provided by birth doulas statistically improves birthing outcomes6. While there is a paucity of studies on death outcomes as this formalized end-of-life role is new, it stands to reason that the amazing positive statistical conclusions seen with a birth doula present will translate to the positive addition of a death doula when patients and their loved ones are facing the end of life in hospitals. During this year's Oncology Nursing Society Congress, Lorraine Holtsland, Ph.D., RN, CHPN, presented a poster supporting the notion of adding certified death doulas to the medical team via hospital hiring to not only support the nursing team at the bedside but to augment the dignity of the dying and provide services that can bring equity to care delivery7. What Does the Future Hold? It remains to be seen how the EOLD role will evolve. The National End of Life Doula Alliance, in concert with the NHPCO, is working to clearly define the role and set core competencies8. The question of if and how the death doula will be integrated into the hospital care management team is still unanswered. Hospice nurses are beginning to see these privately-paid support persons in patient homes right now. Hospice organizations are inconsistently embracing this addition to their patient care teams. Death doulas and their advocates argue that this role holds the potential to improve end-of-life care by empowering patients and families and possibly reduce the burden of care in health care systems. Time will tell. References/Resources 1The Historical Significance of Doulas and Midwives 2NHPCO: History of Hospice 3UTNE: Phyllis Farley 4NHPCO End-of-Life Doula Council 5Death Doulas Used to Be Rare. The COVID-19 Pandemic Changed That 6Continuous support for women during childbirth 7Incorporating a Death Doula into the Oncology Care Team 8NEDA Mission, Vision, and Values

Remember when you first started nursing school and didn't know what med/surg or gtts meant? I sure do, but soon nursing language became second nature. Now I can't even jot a quick sticky note to my partner without automatically writing, "see you p the show!” (Line over the 'p,’ of course!) While all nurses share a common lexicon of medical abbreviations and terminology, each specialty has its unique jargon; hospice nursing is no exception. Throughout my time working in hospitals, long-term care and home care, I experienced some nursing staff using end-of-life vocabulary incorrectly when discussing patient care. Or, there was a hint of judgment, probably based on inexperience or maybe fear, when discussing end-of-life topics. I've compiled a quick reference guide, in alphabetical order, for common hospice terms below. Some were probably reviewed in nursing school and may have been forgotten; others could be new to you. Check out your hospice terminology knowledge. Your end-of-life literacy may be better than you think! Active Dying This is the final stage of the dying process. It often, but not always, comes with typical presentations that include, but is not limited to: irregular, open-mouthed, noisy respirations; periods of increasing apnea; mottling; unresponsiveness; cool extremities; decreased urine output; agitation; incontinence of bowel and bladder; fever; hallucinations. This phase averages from one to three days, and sometimes longer. Advance Care Planning This is the action of formalizing end-of-life wishes. The term 'advance directives' is an umbrella term for state-specific documents that include naming a healthcare proxy (medical power of attorney) and a living will. Depending on the person, it can also collectively contain organ/tissue donation status, a DNR and/or Physician Orders for Life-Sustaining Treatment (POLST). The POLST is called by different names in different states but has the same intent. What is it known by in your state? Anticipatory Grief When someone receives a terminal diagnosis, the dizzying journey through grief begins before the loss has happened. Loved ones begin imagining life without the patient. The patient begins grieving their future demise. In my experience, it seems to be a valuable process for everyone involved when actively supported and understood and, with the help of nursing staff, can lead to healthier psychological and spiritual outcomes. Cheyne-Stokes Breathing This respiratory pattern is named after 19th-century physicians John Cheyne and William Stokes, who first described this unusual presentation observed not only at the end-of-life, but as one of the results of acute stroke and heart failure1. It is a sure sign death is near. Slow, regular breathing becomes tachypneic, ending with progressively longer periods of apnea. With the next breath, the cycle starts once more until the body finally shuts down all systems. Sublingual morphine sulfate administration is usually ordered for this symptom. Comfort Kit or E-Kit Every individual hospice has similar variations of this collection of medications they provide immediately upon home hospice admission called a comfort kit. These are typical medications most dying patients need at the end of life to provide symptom relief. Exacerbations frequently happen at night. Twenty-four-hour pharmacies are not found in every community. Having an orificenal of medications already in the home makes for quick symptom management for the hospice nurse or the educated family. One example of a comfort kit: Morphine sulfate liquid (20mg/1ml), lorazepam tablets (1mg), acetaminophen rectal suppositories (650mg), bisacodyl rectal suppositories (10mg), ondansetron dissolving tablets (4mg), senna-s tablets (8.6mg/50mg), atropine eye drops (1%) used sublingually per MD order. Death Rattle This is an archaic term no longer used at the bedside however, you may still hear laypeople (or the occasional nurse) bring it up. As death nears, the unresponsive hospice patient may have a concurrent build-up of fluid in the lungs and the inability to clear the resulting secretions. The phlegm sits on the vocal cords and sounds quite loud. Loved ones at the bedside are invariably concerned the patient is "drowning.” Oral suctioning is not recommended as the secretions are out of reach and deep suctioning is not comfortable. Reassure those at the bedside of the normality of this end-of-life symptom, turn the patient on their side and elevate the head of the bed. Atropine drops or a scopolamine patch are usually physician-ordered but not always effective. Sometimes secretions persist no matter the intervention. This is normal. Denial This is but one of five human reactions to the dying and death process, as famously articulated by Dr. Elizabeth Kubler-Ross2. I included this term because I've heard more than one nurse discussing patients and families privately in the medication room, saying someone is in denial. They use a tone of voice, implying this is a disgraceful way to respond to the reality of illness and death. Denial is a brilliant psychological protection mechanism that acts as a sort of tap handle to slow down the enormous flow of information and feelings each human must deal with when looking death straight in the eye. Curb the judgment and offer a true listening ear. Denial is normal. Failure to Thrive This diagnosis describes global debilitation, usually in the elderly, that includes a decrease in weight, appetite, muscle mass and physical strength3. In the past, the hospice medical director was able to use FTT syndrome as a primary diagnosis for hospice admission. The patient, in essence, would be "dying of old age.” Centers for Medicare & Medicaid Services (CMS) no longer allows FTT as the determining code for hospice admission, but it can be a secondary diagnosis4. Grief vs. Bereavement vs. Mourning Sometimes these terms are used incorrectly. Grief is the internal feeling associated with loss. Mourning is the outer expression of said feelings. Bereavement is the period of time one experiences grief. Hospice Care Team (IDT) The hospice care team, or Interdisciplinary Team, typically consists of the Case Manager/Nurse, CNA, social worker, chaplain, and volunteers. Patients have a right to refuse all hospice service provider visits offered except nursing. MAID Medical Aid in Dying is the appropriate term to use in place of euthanasia or assisted suicide, according to patient rights activists5. At the time of this writing, eleven states have legalized this choice for the terminally ill. Many nurses, no matter their personal beliefs, will undoubtedly be in a position to discuss MAID with their patients/families sooner or later. An in-depth discussion of MAID is beyond the scope of this article. See the link below for more information. Mottling As the heart becomes more and more inefficient and blood pressure drops at the end of life, circulatory blood pools, especially around the extremities and pressure points. Mottling has a dark red or purple marbled appearance on the skin. It can appear and disappear multiple times during active dying or not show up at all in some cases. Obtunded The presentation of unresponsiveness or low level of consciousness; what lay people call the "death coma.” Palliative vs. Hospice These are not interchangeable terms. Palliative medicine is the "in-between" care a patient can receive when curative measures are no longer effective. Palliation anticipates and attempts to decrease negative disease progression symptoms. A good example of this is palliative radiation for tumor debulking. Hospice, in the United States, requires a primary care provider to establish a patient has six months or less to live based on the presence of one or more terminal diagnoses. Terminal Fever In the dying process, all body systems shut down, and the brain is no exception. Terminal fevers can arrive as the brain longer regulates body temperature correctly. Acetaminophen suppositories are the go-to antipyretic medication ordered, but sometimes, even this is ineffective. Applying a cool cloth to the forehead can lower body temperature and is a lovely way for loved ones to show caring at the bedside. Terminal Restlessness Sometimes called terminal agitation, this common sign of transition looks like anxiety, agitation and/or confusion/delusion. Some patients attempt to get out of bed even when they are too weak to bear weight safely. Some see family members, long since passed, in the room. This is comforting for some but can create anxiety for others. A nurse may see the dying patient "pick" at their bedclothes or linens, often disrobing themselves over and over again. Some manifestations of terminal restlessness can simply be gently redirected to provide patient safety and comfort. Other times, the symptoms can make patients rather aggressive and require medications to reduce discomfort. After all, agitation is not comfortable for anyone, and hospice is all about providing comfort care. Well, how did you do? Did anything surprise you? Did you add anything new to your end-of-life nursing vocabulary? Nurses have to know so much these days about a variety of care provision topics. When a nurse learns new terminology or corrects their misunderstandings of previously known concepts, this can only improve their practice and provide even better patient care. References/Resources 1 Cheyne Stokes Respirations 2 Kubler-Ross Stages of Dying and Subsequent Models of Grief 3 Geriatric failure to thrive 4 Hospice The Adult Failure To Thrive Syndrome 5 Compassion & Choices

What this nurse is saying is the sliding scale you gave us is 100-200, 200-300. If the BG is 200, do you give the lower insulin dose or the higher dose? She is correctly saying the order MUST be clarified with the PCP to clarify the scale. It is correct and safe to, for example, read: 100-200, 201-300, 301-…. Sliding scales are, in some areas, becoming a thing of the past. They are often the source of med errors. In other areas, they are still the standard. I’ve seen both. We have newer long-acting and medium-acting insulins, administered via dial pens that are starting to replace short-acting insulins that require sliding scales. Hope this helps! P.S.—for the OP—I would ALSO clarify with the PCP if the order should read: >400-call PCP OR should it read >400-give 8 units and call PCP?

Each hospice patient/family is unique. Each care plan and end of life wishes are unique and can change hourly. Excellent communication with all involved is paramount. Your comments make hospice nursing seem black and white. It never is. I initially asked the author of the OP to clarify where in the dying process the patient was at. If they are what we call an “early admission” and still interactive with their environment, high O2 could be seen as an appropriate intervention to promote quality of life and give more time with loved ones while they are still relatively stable. I have not seen that high of liter flow in the home setting but interventions can vary hospice to hospice, medical director to medical director. On the other hand, if they are transitioning into the ‘early dying phase,’ this high liter flow is most likely extending their life. Again, knowing ahead of time what the patient wants is the basis of what interventions will be implemented. This may be exactly what they want. Patient/family education is crucial and ongoing. When the patient becomes obtunded/unconscious as they near death, liter flow is usually decreased and morphine/Ativan initiated/increased. Sometimes, O2 is DC’d all together, per family request and always based on thorough education. No hospice nurse will “drug up” a patient for convenience. That would be unethical. But sometimes there is a choice to be made. Are symptoms worth the higher level of consciousness? Some patients think so and refuse pain meds/respiratory meds (morphine) for this very reason. As the process continues, more education and conversations happen with patient/family, always discussing the options and outcomes of said options. During transition and active dying, comfort usually wins over. It’s so difficulty to give answers to hospice questions in a forum setting. Patient wishes, variable end-stage disease symptoms, family dynamics, religious beliefs, past medical traumas…dying and death brings up so much to address within the home. All of these things cannot be shared on-line. Hospice nursing is an art form. It’s a delicate dance for sure. So glad we’re here talking about it though! So much to learn from each other…

Great info above but my question is why is a hospice patient on such a high liter flow? Are they an early hospice admission and are still interacting with their support persons/upright/eating/toileting themselves, etc? Or are they nearing the end of life? My experience in hospice is that this intervention, at the end of life, is prolonging life and breathlessness can be managed with morphine and an anxiolytic like Ativan. Thank you for being in hospice. It’s a special calling.

I like that perspective! Keep up the great writing!

Thank you for this informative article! As an older nurse, I’ve worked really hard to adjust my vocabulary in order to become more inclusive. Asking for their identified pronouns is but one of the ways I’ve pivoted so I can make folx more at ease when they are at their most vulnerable. Nurses can be judge-y…but we can do better.

Along the way, I've met many nursing students and new grads who have a "hospice heart.” They share their stories of witnessing a loved one die at home, having relevant experiences during this event and now feel that hospice is their calling as a nurse. Or, they work as a CNA in a skilled nursing facility and lose their favorite resident and now want to help others at the End-of-Life. I get that special feeling myself. Attending the dying and death journey, for some of us, brings an almost indescribable heart-centered warmth even in the midst of loss. The inexperienced nurse then assumes THIS should be the job they apply for upon graduating. The birth of a career passion is strong medicine, yet it is not enough to be the "wind beneath my wings" for a green nurse when it comes to practicing home health care hospice nursing. There is so much transferable knowledge yet to be learned in facility nursing at the beginning of any nursing career. A new grad has little time spent in learning and prioritizing when it comes to med administration, wound care, pleural drains, foleys, and physical assessments (and more!), not to mention dealing with difficult family dynamics that require professional communication know-how. Home health care hospice is an advanced practice role. You are alone in having to rely on your critical thinking skills based on your unique library of nursing experiences. Also, home environments are less than ideal at best and sometimes just plain awful to practice nursing in. Throw in all the dysfunction death brings up in some families and you have a recipe for failure as a new nurse. It takes creative ingenuity at times to problem solve and this comes with time and practice. Additionally, the hospice medical director relies on keen nursing assessments in the field when the need to call them for changes in condition or upon admission arises. They aren't actually seeing what the hospice nurse is seeing in the moment so being able to give a detailed report as well as anticipating patient needs is crucial...and not so easy for a newbie nurse. Facility settings provide greater support and mentoring opportunities when still wet behind the ears. There are always other nurses, doctors, PT, OT, ST, RT, etc. to grab for their input. Charge nurses can be spectacular for assisting with a difficult NG drop or IV line blockage. A new nurse will see a plethora of things in a facility over time that can be directly applied in the home setting. Are you still considering the hospice nurse role? Here are 7 suggestions to prepare any student or new nurse in the meantime. 1️⃣ Volunteer At Local Hospice Hospices receive Medicare/Medicaid reimbursement and, thus, are required to provide a certain number of volunteer hours to their patients/families. They are always happy to have volunteers! They furnish basic hospice training before seeing patients that will lay the groundwork for this nursing specialty. 2️⃣ Ask To Be Assigned To Preceptorship This can give you critical experience in what a typical day is like for hospice nurses. It can be eye-opening. 3️⃣ CNA License? Find Job At In-Patient Unit This is exactly what I did while I was in school. It was a 5-bed unit with just the nurse and me...talk about a paid preceptorship! I learned so much about comfort measures and had the privilege of holding the hands of the dying. I treasure that time as an aide when I truly made a difference and acquired hospice training at the same time. 4️⃣ Consider Position In Oncology, ICU, Palliative Again, you will have loads of resources and assistance all around you to launch your nursing career and this knowledge can eventually lead to being successful in the hospice nursing role. And, don't disregard a solid med/surg position. 5️⃣ Hospital Certification Programs Becoming a Certified Hospice and Palliative Care Nurse (CHPN) is a brilliant step toward a hospice nursing career. Yes, there's more studying ahead. However, you can get additional alphabet soup behind your name that equals mastery of a subject matter: in this case, hospice nursing philosophy and care. I took advantage of my hospital's program while I worked on Oncology. They paid for my testing fee and awarded a yearly bonus to boot for having this certification. Besides that, it looks great on a resume when you finally apply for your first hospice job. Win-win! 6️⃣ Long Term Care Positions Contrary to nursing myths, LTC is NOT where old nurses necessarily go before they retire. (And what's wrong with that? They've seen and done it all! What a resource!) Geriatric nursing is a complex, demanding and rewarding specialty. You will see tons of end-stage disease trajectories, learn many of the treatments provided in hospice and make a difference in so many special lives. And here's a little secret: you work in their home. And residents die there as well. The difference is that you'll have facility staff and a visiting hospice team to learn from and support you along the way. Make sure to ask the hospice team questions, get your gloved hands on dying patients, talk with bereaved families who visit and practice your bedside hospice manner. You'll see multiple deaths over time. You can learn all the comfort measures that are needed in End-of-Life and can practice using your "gut" senses that will aid you when you are out in the field alone as a home care hospice nurse. For example, do you think Bill will die tonight...were you right? What clinical findings did you put together with your nursing intuition that lead you to be correct? What transpired if you were wrong by a day or three? The nursing home IS the resident's home. And, you will get close to many of them. Ask yourself this: when they finally pass, did it wreck you to the point of deep sorrow and demonstrative crying? Or, were you able to have professional distancing and show up at the bedside to skillfully support both the resident and the family with a simple, compassionate tear in your eye? A hospice nurse must come with the ability to realize that they are there to facilitate a patient/family life event. In other words, you cannot be in hospice if you get overly attached and make it about you. This can take time to learn for many nurses. 7️⃣ Do Home Health Care After First Year You may be chomping at the bit to try your nursing chops out in the field right now. Starting in a home health care position is a great segue to hospice nursing. Home care has its own set of nursing challenges. All field nurses must eventually master quite a juggling act. You will see multiple patients a day in a variety of home environments that require all sorts of treatments, usually done in the hospital. Managing travel times, unforeseen events and trips to pick up meds at the pharmacy for your patients will be time-consuming and demanding. Are you able to keep up? Then there are hours of computer charting you do at home that MUST be done in a timely fashion per organization policies and CMS regulations. You won't be pulling out your tablet/laptop at the bedside to chart, thinking you'll save time. You will be more effective, and patient safety will increase if you are fully present in the home when you are observing them and not on a screen. You'll get a crystal clear idea of the logistics of home hospice nursing if you first start in home care. Home care is different; you don't get to leave your job at the time clock at the end of the day. Work follows you home. So, you know you have a heart for hospice. And, like me, if you know, you know. Try one or more of the above suggestions while you start to hone your basic nursing arts. Hospice will always be there, waiting for your special, experienced nursing savvy and compassionate nature.

Great info, Leanna! The ten thousand steps myth was so quickly dispensed as truth we didn’t even question it…until now! Keep up the good writing work!