When the Body is Dying

When the Body Is Dying: Pain Meds, Fear, and Courage

My guest author for this month is Barbara Karnes, RN.  Barbara is a hospice pioneer and an award-winning, end-of-life (EOL) Educator, Author, and Speaker. She has authored six booklets on the dying experience that many end-of-life care providers rely on.

Barbara received a nursing degree from Nebraska Methodist School of Nursing. She has worked as an Executive Director of Hospice Care of Mid-America and as the Director of Hospice & Home Health at the Olathe Medical Center in Miami. In 2015, Barbara was named International Humanitarian Woman of the Year.

Ms. Karnes has dedicated the last 35 years to the care of the dying and their loved ones. The most useful information that she has learned sitting at the bedside of hundreds of dying patients has been distilled and distributed to these helpful booklets.

The booklet authored by Barbara that I represent here is called, “Pain At End of Life: What You Need to Know About End of Life Comfort and Pain Management.” Her booklet accomplishes three goals: first, it provides basic insights on what we can expect during the dying process; second, it explains the categories and role of medication; third, it dispels the myths about medications and the nature of dying.

I first heard of Barbara Karnes when I stumbled upon her booklet called, “Gone From My Sight: The Dying Experience.” I utilized that wise information when I worked as a hospice Chaplain. The excerpts cited are taken from her booklet (with my comments). Information on where to contact Barbara to read the complete version of “Pain At End Of Life” and to order her other amazing resources is included at the end of this blog. The reprinting of sections of Ms. Karnes booklet is done with her permission.

“Pain At End Of Life” by Barbara Karnes, RN

BK: “Taking care of someone as they approach the end of their life is different than taking care of someone who is going to get better. Most people don’t know that.”

MCT: Many families that I have worked with struggle with the dying process of their loved ones. Families often feel desperate and are floundering emotionally. They wrestle with the inevitability of death but still hope for a miracle. They feel powerless and strain to supply some measure of comfort. Grief is normal. One of the ways we all seem to find comfort is through food and we hold tender memories of family celebrations and holidays around the dinner table. However, in the final weeks and days of life, the loss of appetite is to be expected. No one feels like eating when ill. And no one should be encouraged to eat when the body is breaking down and cannot properly digest food.

A lot of education and empathy are needed for families during the dying process. RNs, Chaplains, Social Workers, Physicians, and Doulas can help them maintain realistic expectations. Instead of feeding our loved ones physical nourishment in the final days, we can deliver nourishment to the soul that is laboring to pass out of the body. Insistence on eating might only lead to more discomfort for the patient. What about hydration? Many families want to push fluids if eating is no longer possible. Patients who cannot swallow, but have a dry mouth will benefit from moistened swabs.

Disease Causes Pain

BK: “Dying from old age or disease has a process to it. The disease that is causing death is what causes pain. Not all diseases that people die from cause pain. How a patient expresses pain depends on their personality.”

MCT: Often, it is helpful to ask family members their opinion on a loved one’s subtle messages concerning a level of pain. We know them best. Some of the less obvious signs of pain that I witnessed during the dying process of my patients and parents were as follows: furrowed brows, grimaces, whimpering, repeatedly touching the same area of the body, constantly trying to change position, and shortness of breath, among others.

My father was the “stoic German” that Barbara referred to in her writing. My dad dealt with the death of his own mother as a young child and the poverty and hardship of the Depression Era. Near the end, when my dad was still residing at an Assisted Living Facility, we realized that cancer had progressed to his liver when he starting sleeping on the couch in the living room. I noticed his blankets bundled in a heap there one morning and inquired about it. He said his lower back hurt and he couldn’t get comfortable in bed.

Subsequently, his reticence to complain continued at Angels Grace Hospice until the pain was quite pronounced. Initially, the staff was challenged to catch up to the increasing discomfort and “cover” it in a timely manner. Eventually, they managed to get out in front of it. As Barbara stated: “There is no quick solution to effective pain management.” It is a process of “trial and error.” But between our advocacy and the astute observations by our RN, a successful plan-of-care was instituted. That is precisely why the patient and family are regarded as one unit in hospice.

Fear Of Dying

BK: “We are all going to be afraid when it comes time to die. When a physician says, “I can’t fix you,” fear immediately becomes a part of our life (whether we want to acknowledge it or not). Fear increases physical pain. The job of the Palliative Healthcare Professional is to provide comfort and to use as many methods as possible to reach that goal. Any supplemental therapies that can be used toward comfort are helpful as well: Music, massage, meditation, hypnosis, and Reiki have a place in the months to weeks before death.”  

MCT: It is normal to be intimidated by death. It doesn’t matter how well-acquainted a person is with hospice or with the positive-death movement. It doesn’t matter if one is a professional working somewhere in the death industry. It doesn’t matter how spiritually mature, centered, meditative, or religious a person is—death is a daunting specter. But it shouldn’t be unduly frightening—not at all. Yes, dying is a major life transition; a complete metamorphosis. A supernatural happening that can be prepared for and understood. Hopefully, one can plan a good death and a personal ritual if hospice is initiated in a timely fashion.

Anytime we embrace change in life and head down “the road less traveled” we all experience some fear and anxiety.  We should. It is to be expected. That is a natural response. It can be productive and a good thing, not a bad thing.

For example, trepidation accompanies us when we walk into our first teaching assignment. When we execute that first surgical incision. When we undertake a leading role on stage or perform a solo in the concert hall. When we birth our first child into the world. When we deliver our ideas and images to the world through painting, print, or film. In these first-time situations, we test our formation, knowledge, skills, and preparation. We test our fortitude and resiliency. We learn, practice, and improve. We continue to co-create and solve problems for the natural world and humanity. Demanding experiences propel us to greatness. The art of dying is similar and calls for similar character traits.

During the act of dying–we test our faith, fortitude, spirituality, and courage for the last time on earth—for the benefit of those left behind; but more importantly, for our own spiritual maturity as we progress toward eternity. Further, our role in hospice care is to “anesthetize” the fear for the patient through palliative care (boost quality of life), dispensing knowledge, delivering support, prayer, encouraging family presence, and consistent and effective pain delivery.

When pain management is handled deftly, the patient can actually benefit from supplemental comfort methods like music, pet therapy, energy or light techniques, legacy projects, transition rituals, physical therapy, and visitors.

BK: Barbara states: “Fear increases physical pain.”

MCT: In the Journal of Health Care Chaplaincy (25: 150-153, 2019), research has shown that having a Chaplain on the interdisciplinary team to address dimensions of spirituality helps to lessen the fear and anxiety of patients. Subsequently, it can lessen their physical pain and have positive effects on their overall sense of wellbeing while on hospice. The RN Case Managers that I worked with were always encouraging patients and families to include Chaplains on their clinical team for this reason. Only professionally-trained chaplains can perform the spiritual assessment, deliver corresponding interventions, and devise a hospice-care plan to address spiritual needs. The Attainment of the spiritual goals throughout the pastoral care visits will facilitate the highest quality of life in the final days and hours of a patient’s life.

Standard Dosages and Pain Protocols

BK: “There is no quick solution to effective pain management. There is no standardized dosage for end-of-life pain medication. Finding the right pain medicine and dosage depends on multiple factors: medication history, pain tolerance, disease history, phase of the dying process, and personality.” Most importantly, “as death gradually approaches, nothing in the body works the way it should.  Medication is not going to work in the manner, or the typical time frame as it would in a healthy body.”

MCT: I have found that families can easily panic or get anxious if there is any delay “covering pain for their dying loved one. But Barbara makes a valid point that “pain management is not an exact science or a one-size-fits-all remedy.” However, if the pain is not addressed by the staff because of inexperience, inadequate staffing, or negligence that is a different kettle of fish. I hear horror stories of inexperienced RNs forgetting to order a new Comfort Kit, trying to use an expired kit, neglecting to follow-up on fax orders for medications, or using faulty equipment. A hospice comfort kit (or E-kit) is a small supply of medications kept in the home or skilled-nursing facility, so immediate treatment of symptoms can occur. Medications are included to address four symptoms: pain, anxiety, nausea, and increased secretions.

Pain Options At The End

BK: “As death approaches, we now address the pain from the disease differently. We may have to increase the dosage to achieve comfort. During this time–we observe, adjust, wait, observe some more, listen, and perhaps readjust until comfort is reached. Medication should equal the amount of pain a patient is in. It requires time.”

Pain medication does not take the pain away, it simply covers it up. As the medication wears off, the pain is present again. Consequently, pain medication must be dispensed around-the–clock, so as to keep the medication in the bloodstream.”

MCT: This statement should be written across the threshold of every hospice office in the country. The biggest complaint that I receive in my advocacy work is from families complaining about mistakes made in the area of pain management, mainly timely dispensation.

There are different levels of pain medications for dying patients. Patients can be treated with over-the-counter drugs for a low level of pain, or for moderate to severe pain, treatment might include opioid analgesics like morphine and fentanyl. The use of oxygen can also be therapeutic in pain management, as chronic pain is driven by the absence of oxygen (hypoxia).  

In the last few days of life, a person will become nonresponsive. In other words, they will not be aware of what is going on around them. The final sense to vacate the body at the end is hearing, so even if a loved one is not speaking or seeing, often they can hear what is being said around them. Therefore, clinicians often encourage families to continue speaking directly to their loved ones. Further, just because a patient is nonresponsive doesn’t mean that they are free of pain. Clinicians need to carefully observe the patient for nonverbal signs of pain.   

Restlessness

BK: “Agitation, restlessness, random hand movements, sleeping with eyes partially open, muttering, or talking without making sense are all part of the labor of dying and NOT painful. However, severe agitation can be treated with anti-anxiety or antipsychotic drugs.”

MCT: In addition to restlessness, many families notice an increase in secretions emanating from the patient’s nose and mouth. Breathing may be accompanied by a gurgling sound (termed the “death rattle”). Again, each person is different, but the crackling or gargling sounds result from each breath as it passes through a collection of mucous and it can vary in intensity. It is due to the loss of a coughing reflex, so the person can no longer clear saliva and mucus from the back of the throat, the respiratory tract, or the lungs.

While the sound may be unpleasant and is distressing for family members, the patient usually feels no pain. Drugs such as Scopolamine patches and atropine drops are often helpful in drying secretions, and a change of position can often dislodge mucus. For example, my dad’s death rattle was so pronounced and loud that it sounded like he was drowning and visitors could hear him from adjacent rooms. Of the numerous remedies proposed for his accumulating respiratory secretions, the most efficacious was suctioning. While generally used as a last resort, our Physician ordered it (as needed) for my dad’s comfort. It helped that he resided in an inpatient hospice residence where the appropriate equipment was at hand.

Myths About Morphine

BK: I think morphine is the most feared and least understood of all pain medications. For example, a dying person is administered morphine and twenty minutes or even an hour later, they die. Consequently, the family believes that the morphine killed their loved one. Morphine wasn’t the cause of death: When a person is that close to death, the circulation is not working normally, so the medication does not have time to get to the heart and lungs where it causes death.

MCT: Non-hospice staff at long-term-skilled-nursing facilities (SNF) need education on hospice care, but in particular, about morphine. For example, I had a patient die in extreme discomfort because a certified nursing assistant from the SNF tore up our physician’s order for increased morphine. She told her nursing supervisor the next day that she thought we were trying to hasten the patient’s death (she didn’t use the term “hasten”). By the time our on-call, 3^rd shift RN realized the problem, the pain had a head start and we couldn’t catch up. Morphine, to the uneducated, can be a “mysterious and potent drug that is to be feared.”

Further, because the staff at the nursing homes (SNF) are considered the primary care-givers of our hospice patients, they are tasked with dispensing hospice medications. Therefore, we try to educate their staff on hospice philosophy and medications, but because there is such a high turn-over rate at many nursing homes it is difficult to keep abreast of the education they need.

Finally, I reiterate what I caution on my website: “In my experience, sometimes hospice care is only as effective as the quality of the nursing home in which it is practiced. Therefore, be careful with whom you place your loved one before hospice care is even needed.  

Handling Complicated Pain in Hospice

MCT: Finally, Ms. Karnes reminds us that “induced medical sedation is not about hastening death. This is an option for providing pain relief from intolerable pain until death comes naturally.” She goes on to say that the first resource on pain management is the hospice nurse, or if not enrolled in hospice, then speak to your physician about the plan for your loved one’s pain management.”

Earlier this year, I interviewed Dr. Christopher Lawton who was working for Froedtert and the Medical College of Wisconsin as a Palliative Care Physician. I posed a question that I received during speaking engagements: a taboo topic in most religious circles. He assured me that there is no need for physician-assisted suicide. Consumers should be heartened to know that adequate pain medication is delivered through our current system of Palliative Care Medicine and Hospice Care (for chronic and life-limiting disease and end-of-life pain).

Takeaway thoughts from MCT: I cannot emphasize how crucial timely pain-management becomes in the final days and hours on hospice care. Of all the effective comfort strategies offered by hospice providers, the one clinicians are ethically responsible for and charged to get right is successful pain management. That is their primary task and justification for being in business. CHOOSE YOUR HOSPICE PROVIDERS WISELY.

I want to thank Ms. Barbara Karnes for allowing me to cite her work on pain management in hospice. To order her booklets and DVD kits visit www.bkbooks.com. Visit her website and submit questions on her award-winning blog: “Something to Think About.”