Improving Your End-of-Life Literacy

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by NurseDeltaInk NurseDeltaInk, RN

Specializes in Freelance Health Care Writer|End-of-Life Educator. Has 19 years experience.

A hospice terminology guide for every nurse to review in order to correctly address and educate patients and families facing end-of-life.

Educating patients and families facing end-of-life

Improving Your End-of-Life Literacy

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 arsenal 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.

FACT: 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

1Cheyne Stokes Respirations

2Kubler-Ross Stages of Dying and Subsequent Models of Grief

3Geriatric failure to thrive

4Hospice The Adult Failure To Thrive Syndrome

5Compassion & Choices

Delta Waters RN spent her 20-year career focusing on geriatric and hospice specialties. In addition to years in hospice home care and in-patient hospice, she worked in the hospital system on the Oncology and Acute Cardiac floors as well as in home health, long-term care and LTC rehab. She even had the honor of serving as the Health and Wellness Director at a private-pay Assisted Living/Memory Care facility in Northern Colorado. Now, she is pivoting her talents toward educating and sharing her experiences in nursing through freelance health care writing. Nurse Delta has a B.A. in Creative Writing/English as well, positioning herself perfectly at the intersection of nursing knowledge and the articulatey written word. Delivering a synthesis of the complex world of modern health care along with an accessible writing style is the outcome. Nurse Delta also offers on-line advance directive creation courses. In addition, she is a Reiki practitioner and holistic health champion. Delta lives in the beautiful Four Corners region of New Mexico with her partner and wire-haired Border Terrier, JoJo.

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5 Comment(s)

Nurse Beth, MSN

Specializes in Med Surg, Tele, ICU, Ortho. Has 30 years experience. 151 Articles; 2,718 Posts

So informative! I am going to read this more than once. Thank you

VivaLasViejas, ASN, RN

Specializes in LTC, assisted living, med-surg, psych. Has 20 years experience. 142 Articles; 9,977 Posts

I like the term “transitioning” to describe the final journey into death. Especially for those who believe in an afterlife, it can be very comforting to hear that their loved one is soon to transition to a higher plane where they will be reunited with their God and their family and friends who have gone before. It was the word my husband’s hospice nurse used when he was actively dying, the word I myself had used with other families whose mother, father, aunt etc. was in the process of  leaving this world.
 

I never had the privilege of being a hospice nurse, but I did work with them a lot and learned a great deal from them that I incorporated into my practice when I was caring for their patients. So I understand the lingo and appreciate this article because it reminded me of some very special people. 😊

NurseDeltaInk, RN

Specializes in Freelance Health Care Writer|End-of-Life Educator. Has 19 years experience. 3 Articles; 16 Posts

10 hours ago, VivaLasViejas said:

I like the term “transitioning” to describe the final journey into death. Especially for those who believe in an afterlife, it can be very comforting to hear

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. 

VivaLasViejas, ASN, RN

Specializes in LTC, assisted living, med-surg, psych. Has 20 years experience. 142 Articles; 9,977 Posts

Yes, I felt it was an honor to be there when a patient breathed their last. It was usually a quiet, peaceful passage, but there was the occasional person who fought death to the bitter end for fear of what might be in store for them in the next world. I took care of such a man 20-odd years ago, whose eyes were filled with terror as he transitioned; to this day I wonder what he saw in that last moment of life that frightened him so. That poor fellow’s death affected me in a way no other has before or after it, and working mostly with the elderly I’ve seen a lot of people die. That particular patient’s death still gives me the shivers.

NurseDeltaInk, RN

Specializes in Freelance Health Care Writer|End-of-Life Educator. Has 19 years experience. 3 Articles; 16 Posts

On 11/20/2022 at 2:00 AM, VivaLasViejas said:

but there was the occasional person who fought death to the bitter end for fear of what might be in store for them in the next world.

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.