Summer 2024 Issue

Time of Death
By Scott Janssen, MA, MSW, LCSW
Social Work Today
Vol. 24 No. 3 P. 18

Health care professionals, especially social workers, can have a positive impact on loved ones when patients die.

When Jay’s mother died in a cardiac ICU, he arrived at the hospital before her body was removed. Intense emotions mixed with “a kind of numbness.” Looking back, much of that day is a blur, but some things are “so clear I’ll remember them the rest of my life”—the kindness of a physician; a nurse removing his mother’s wedding ring and handing it to him.

One memory is especially poignant. “I had this strange feeling, wondering if the body in the bed was still my mom, or if it was something else. I was confused and asked the nurse: What do we do now?”

Jared Lowe, MD, HMDC, medical director of University of North Carolina Hospice, says that when patients die, health care professionals’ interactions with loved ones like Jay can have a significant impact. “It’s important to recognize that the experience of a loved one dying will be remembered by the family for years. They’ll create a narrative around the experience that may be shared repeatedly and become part of their family’s history. The experience they have can directly impact their grieving for months or even years.”

Though many patients die in hospitals, in recent years more are dying at home or in alternate community settings. The CDC analyzed all deaths between 2000 and 2018 and found that the percentage of deaths in hospitals dropped from 48% to 35.1%. During that same period, deaths at home increased from 22.7% to 31.4%. Those in hospice facilities and residential settings like skilled nursing and assisted living facilities increased from 22.9% to 26.8%.”1

Steven Chewning, MDiv, BCC, clinical chaplain and bereavement coordinator at University of North Carolina Hospice, isn’t surprised. “Most people want to die at home surrounded by people who are important to them. In addition to enhanced privacy and control, being at home offers access to beloved pets; there are no visitor restrictions; children can be present, if desired; and cultural or religious rituals are easier to perform.”

According to Robert Shmerling, MD, there are several factors driving this trend: improved treatments, a preference among most older adults not to die in a hospital, better access and greater openness to assisted living and skilled nursing facilities, and the widespread availability of hospice care in home and facility settings.2

There’s also greater awareness among health care professionals about the importance of shared decision making and talking openly with patients about disease progression, how they define “quality of life,” what they consider futile vs efficacious treatment, and where they want to spend their final days.

But what about when death is imminent, when there are no diagnostics to run, no treatments to schedule? What about the moments after death when loved ones like Jay are trying to take in the enormity of what has happened and asking questions like: What do we do now?

Actively Dying
One basic challenge is simply identifying when a patient appears to be within hours to a few days of death, something commonly referred to as “actively dying.” Although some research suggests clinicians are fairly good at identifying when patients across a wide range of illnesses are within the last two weeks of life,3 identifying those who are actively dying can be difficult.4

According to Lowe, “research studies5 have identified several signs that can indicate someone is in the actively dying phase, but most clinicians are not taught those signs, and there can be wide variability in how a patient’s course progresses based on their underlying disease.”

Along with general indications of approaching death such as increased sleep and diminished responsiveness, Lowe says “clinical signs that strongly predict death within three days include changes in the person’s breathing patterns, such as cycles of rapid shallow breathing followed by periods of slow breathing or pauses in breathing (Cheyne-Stokes breathing) or shallow breathing where the lower part of the jaw moves with each breath (mandibular breathing); blood pressure decreases and changes in circulation such that the person’s pulse in their wrist cannot be palpated; and the patient produces minimal urine (less than 100 mL in a 12 hour period).”

When practitioners believe a patient is actively dying, steps can be taken. The environment might be modified to enhance privacy. Family members may be called and offered emotional support. If care is being given in the home, a hospice team might start making daily visits.

Patients with potential complications associated with dying—such as the risk of seizures or bleeding—can be identified and plans made. The family of a patient living at home who has a high risk of external bleeding, for example, might be advised to use dark bed sheets and towels and receive guidance on safely handling these if they become saturated with blood.

Good symptom management and pain control are essential. Unfortunately, according to Blinderman and Billings, among those dying in the hospital, “poorly controlled symptoms have been documented in patients with advanced cancer, congestive heart failure, chronic obstructive pulmonary disease (COPD), and many other life-threatening conditions.”6

Managing symptoms may be complicated in dying patients who are no longer able to interact verbally or swallow medications. In-home or facility settings, some caregivers may need education about administering certain medications.

“Many actively dying patients develop discomfort with pain, difficulty breathing, or delirium,” Lowe says. “Management of these symptoms can become complicated as patients may be limited in the routes they can receive medications, and the treatment often involves use of controlled substances that many providers are uncomfortable with prescribing.”

He suggests practitioners in hospitals involve palliative care providers who specialize in end-of-life care and “have training and experience in treating these symptoms and safely prescribing controlled substances. In residential facilities or at home, hospice provides specialist end-of-life care and is a best practice for patients whose goal is to prioritize comfort at the end of life.”

In one study, Carey et al found that families whose loved ones died in the hospital were generally satisfied with the level of symptom management, but there were areas that needed improvement: addressing the dying patient’s anxiety or sadness, emotional support of the family, communication regarding decedents’ illnesses, and reducing the amount of contradictory or confusing information.7

Lowe agrees that priorities should include enhanced psychological and emotional care, clear and reliable information about the dying process, and good, consistent communication from the entire medical team.

“It’s incredibly important to engage the other members of the interdisciplinary health care team, including social workers and chaplains who are trained in providing psychological and grief support.”

When Chewning visits dying patients, he invites families to share and process thoughts and emotions. “I may also name things that I notice about the patient or their relationship with their family. Things like ‘There is a lot of love in this room,’ or ‘You have worked hard to honor a loved one’s wishes.’”

He engages them in life review and storytelling. “I might ask what was important for this person in their life. I might ask about his or her faith tradition and spirituality. If that doesn’t resonate, I will ask about core values. What would be a core value for your loved one? These kinds of questions can open a doorway to storytelling, life review, and connection, all of which can be meaningful and healing for the family.”

Though supportive conversations can be helpful, he notes that “at times there are not adequate words for a situation. Standing in silent solidarity with a family can be a sacred, meaningful act.”

Lowe takes time to help families understand what is happening to their loved one’s body and what to expect. “I describe the dying process to families as everything slowing down. The mind slows down, the person starts to sleep more and may become confused, until they’re sleeping all the time. The breathing slows down, the person may develop pauses in between their breaths that can last for five, 10, sometimes even 30 seconds. The circulation slows down, so their pulses may get weaker, they may have coolness of their hands and feet, or even color changes like a blue tinge. And as part of that, the kidneys slow down and the person produces less urine.”

He says people often have questions. Is my father starving to death? Is using morphine going to hasten my sister’s death? Answering these questions offers an opportunity to alleviate fears and address beliefs that might be creating guilt or anxiety.

“Families often ask if their loved one can still hear them. In general, we think that hearing is preserved until very close to death, so even if the person cannot understand everything that’s being said to them, they can hear a familiar voice or the tone of the voice and that may bring them some comfort. I encourage families to continue saying all the things they want to say to their loved one.”

Michael J. O’Connor, president and funeral director of Hall-Wynne Funeral Service, says when a death occurs, even when it was expected, it’s important to remember that this is a profound, life-altering event for loved ones. “Doctors, nurses, and funeral directors see these situations daily, but most people do not. Acknowledging that this is a painful, potentially traumatic event and communicating about hospital policies and procedures in a caring and compassionate way can alleviate some of the stress surviving loved ones may be feeling.”

Lowe admits that, even for physicians, nurses, and advanced practice providers, “feeling certain enough to pronounce a patient dead can be daunting. It’s alright to take your time to thoroughly attempt to feel a pulse or listen for breathing or a heartbeat. It’s also important to be familiar with the protocols for decedent care at your institution, if only so that you don’t give misinformation or make promises you can’t keep. Hospitals typically have decedent care departments that can help coordinate everything from removal of the body to facilitating the signing of death certificates.”

In the moments after a death, clinicians may offer emotional and psychological support to family members who are present, give them time alone in the room, or find a private space for them. They may also offer to perform postmortem care such as cleaning and changing the body or assist in rituals.

When calling to inform a patient’s next of kin, Lowe says clinicians should “be prepared to answer questions about what happened and the cause of death. In a hospital setting, it’s not uncommon to get questions around whether CPR was performed and the details of the procedure. You should anticipate questions around what happens next in terms of care of the person’s body and any responsibilities the family will have at this point, such as coordinating with a funeral home or decedent services.”

“It is important to recognize that when the caller ID indicates the hospital or a medical office, many people will assume the worst has happened. When calling families, first introduce yourself and state a general reason for your call, such as ‘I’m calling with serious information.’ Confirm the identity of the person you’re speaking with and inquire if they’re in a place to receive the information. Deliver the information clearly and without euphemism, saying that the person has died.”

“Do not leave a voicemail breaking the news that someone has died. When leaving a voicemail, introduce yourself, state that you have serious information to share, and provide a callback number.”

Helping families anticipate what will happen when the funeral home personnel arrive can lower anxiety about releasing their loved one’s body into the care of strangers. When O’Connor’s team is called, “We contact the next of kin immediately and offer our condolences. We also explain the next steps and who will be coming to take their loved one into our care. Interactions are professional, tactful, and above all, compassionate. When removal staff arrive, it is important to speak with the family and assess the situation, such as the best way to bring in the removal cot.”

“Prior to transferring their loved one onto our cot, it is important that they have the opportunity to say goodbye before we make the transfer and return to the funeral home.”

Health care staff can facilitate a smooth transition by providing the funeral home information like “the name of the doctor who is going to sign the death certificate, next of kin and contact information, approximate decedent weight, and any recommended precautions. We also need to know if there are any specific instructions on where to arrive and park the removal vehicle.”

“A question we often get,” Lowe says, “is what happens to implanted medical hardware after death. If the person is being cremated, anything with a battery in it, such as a pacemaker, is removed by the mortician. These pose a risk in the cremation process and can explode.” O’Connor advises medical staff to remove breathing tubes, feeding tubes, and IV lines. “These are often left in and, depending on the family and circumstances of death—sudden vs prolonged—leaving them in can cause distress to loved ones.”

Some families may request an extended period before removing the body. Chewning says “A family may not have chosen a funeral home. I’ve heard families say, ‘We’ll figure that out when the time comes.’ In such instances, this could take some time. Or the family may be waiting for other family members to arrive and see the patient. Finally, there could be cultural or religious reasons for wanting to wait before calling a funeral home. Many faith traditions have specific rituals that must be done—prayer, body washing, proper dressing—usually from a family member or faith leader.”

According to O’Connor, “Generally, this is no cause for concern regarding the process and pace at which a body decomposes. When talking about a person’s body after death, it’s not like what we see in the movies. Barring extenuating circumstances, and as long as a hospital or nursing home doesn’t have a policy against an extended delay, there is a sufficient time before visible signs of decomposition show.”

“The most common things a family may see are exhaling breath, when the diaphragm and lungs relax and air is released from the mouth. Eyes remaining open, dehydration of lips, and blood settling in inferior areas such as a person’s back and cooling of the body’s surfaces are very common. Occasionally, fluid such as water or mucus may come from a person’s nose or mouth.”

In some cases, there may be issues beyond family notification and support, postmortem care, and removal of the body. Staff may need to coordinate an anatomical donation or arrange an autopsy requested by families or related to a patient’s enrollment in medical research. If death follows a traumatic injury or medication-related event, they may need to contact the medical examiner’s office.

Of course, many deaths cannot be anticipated and planned for in ways patients, families, and health care professionals would prefer. Many are unexpected following injuries or acute events. Over time, geriatric professionals are repeatedly exposed to death and to the grief of loved ones.

Chewning says that although health care workers are skilled professionals, they are also human. When a death occurs, staff may also benefit from psychological care. “It’s not uncommon for patients to connect with at least some part of our own story. Our patients remind us of someone in our own life, or they may remind us of ourselves. And this isn’t a bad thing. Connecting with others is important but it also means we may experience a sense of loss as well.”

“Over time, cumulative losses and exposure to the suffering of others could lead to things like burnout, secondary traumatic stress, compassion fatigue, or grief, which is often disenfranchised.”

He says it’s important to acknowledge these losses and find ways to process them. “Having a moment of silence, a ritual of naming the losses of some kind, can help individuals and organizations remember and reflect on the losses, and honor the important work they provided in caring for patients and families at the end of life.”

— Scott Janssen, MA, MSW, LCSW, is a hospice social worker. He frequently writes about issues related to PTSD and is a member of the National Hospice and Palliative Care Organization’s Trauma-Informed Care Work Group.

References
1. QuickStats: percentage of deaths, by place of death — National Vital Statistics System, United States, 2000–2018. MMWR Morb Mortal Wkly Rep. 2020;69(19):611.

2. Shmerling RH. Where people die. Harvard Health Blog website. https://www.health.harvard.edu/blog/where-people-die-2018103115278. Published October 31, 2018.

3. Orlovic M, Droney J, Vickerstaff V, et al. Accuracy of clinical predictions of prognosis at the end-of-life: evidence from routinely collected data in urgent care records. BMC Palliat Care. 2023;22(1):51.

4. Baum LVM, Friedman D. The uncertain science of predicting death. JAMA Netw Open. 2020;3(4):e201736.

5. Ijaopo EO, Zaw KM, Ijaopo RO, Khawand-Azoulai M. A review of clinical signs and symptoms of imminent end-of-life in individuals with advanced illness. Gerontol Geriatr Med. 2023;9:23337214231183243.

6. Blinderman C, Billings J, Comfort care for patients dying in the hospital. N Engl J Med. 2015;373(26):2549-2561.

7. Carey EC, Dose AM, Humeniuk KM, et al The experience of hospital death: assessing the quality of care at an academic medical center. Am J Hosp Palliat Care. 2018;35(2):189-197.