There's No Place Like Home at the End of Life

By Heather Rose Artushin, LISW-CP

More people are choosing to die at home, which is now the most common place of death in the United States. This cultural evolution offers social workers an ever more integral role in coordinating care and supporting the dying person, their caregivers and loved ones, in the home.

In the past, people believed they would receive better around-the-clock care in the hospital, and families knew to call 911 at signs of decline, often leading to a revolving door of hospitalization and rehospitalization. But public perception has shifted, and today, many believe a “good death” involves being in the comfort of home, surrounded by loved ones in a familiar setting.

“There is a growing recognition that a hospital death may be over-medicalized, impersonal, noisy, and isolating,” said Myra Glajchen, DSW, MSW, ACSW, APHSW-C, director of education and training at the MJHS Institute, and assistant professor in the Department of Family and Social Medicine at Albert Einstein College of Medicine. “Family caregivers would be haunted by images of their loved ones dying with oxygen, tubes and machines, which often led to complicated bereavement. For all these reasons, and with solid high-quality research, people now recognize they have options in care, and many are choosing to die at home.”

While this return to home death in the Western world is recent, the concept of dying at home is anything but new. In cultures around the world, home death has long been the norm, honoring death as a natural part of the human lifespan.

“One thing that strikes me is that there was a time when birth and death happened at home, and it wasn’t even a discussion,” said Nancy Flowers, LCSW, lead social worker at the Kellogg Cancer Center, and section leader for the social work community of the National Hospice and Palliative Care Organization (NHPCO) and the National Alliance for Care at Home (NACH/the Alliance), which are combining operations. “There’s a place in both of my grandparents’ houses where family funerals were held. It was such a part of life. It was when we started funding institutional care that more deaths occurred in the hospitals and nursing homes. Death became a scary thing because you didn’t see it.”

As home death becomes more common, social workers may observe attitudes around death mirroring this shift in response to greater exposure and normalization of the dying process, reducing death anxiety and increasing acceptance.

Palliative and Hospice Care

Palliative care offers a multidisciplinary approach to symptom management, quality of life, and curative treatments for people facing a serious illness at any stage. Palliative care can be delivered in a hospital or outpatient clinic setting, or in some cases at home. Hospice is for those with terminal diagnoses with a prognosis of six months or less and is focused solely on supportive care and quality of life, with no curative interventions. While hospice facilities are widely available, hospice care often is delivered in the home.

Hospice is a fairly new idea, first introduced in 1963 by Cicely Saunders in a lecture at Yale University. Saunders went on to establish the first hospice in the United Kingdom, St. Christopher’s Hospice, in 1967. Elizabeth Kübler-Ross’ book, “On Death and Dying,” also was an integral part of the hospice movement, informing readers about the social-emotional aspects of the dying and grieving processes (NHPCO, 2019).

Social workers are involved in both palliative and hospice care. In fact, Medicare mandates that social workers be involved in hospice care. “Hospice is the gold standard for end-of-life care, and social workers are integral to that,” Glajchen said. For patients who begin receiving palliative care and then qualify for hospice, social workers have an opportunity to facilitate a warm hand-off, seamlessly transitioning the patient and their caregivers to the hospice social work team with extra support and care.

There is a critical shortage of social workers in both palliative and hospice care settings, something that Glajchen hopes to address through the Educating Social Workers in Palliative and End-of-Life Care (ESPEC) training. This interactive, hybrid training program is presented in partnership with NASW. While many social workers continue down the career path they began in their graduate school field placement, Glajchen urges social workers to consider continuing their education in end-of-life work, which can be a rewarding career shift. She also encourages graduate programs in social work to offer more opportunities for students to gain experience in palliative and hospice care field placements.

Cultural Considerations

While dying at home is a current trend for Americans, there are several cultural considerations and barriers to accessing this choice that social workers need to be aware of. According to Karen Bullock, PhD, LICSW, APHSW-C, FGSA, one of the most important health equity issues for social workers to be cognizant of is its historical structural barriers to access. Disparities by demographic and cause of death are prominent when it comes to where a person dies. Research shows that younger people, females, and people of color are less likely to die at home than their older, white male counterparts. Cancer patients are most likely to die at home or in a hospice facility, while dementia patients most often die in a nursing facility. Respiratory disease patients were found to have the greatest odds of a hospital death, while stroke patients are least likely to die at home (Cross & Warraich, 2020). Social workers are well-positioned to advocate for seriously ill clients to ensure their final wishes are respected, regardless of diagnosis or demographic.

“Older Black Americans who were born in the U.S. experienced legalized structural racism in health care settings and systems,” said Bullock, a Louise McMahon Ahearn Endowed Professor of Social Work at Boston College. “Structural racism of racially segregated hospitals was legal until 1965 and many hospitals did not comply with the desegregation laws until well into the 1970s. Such barriers influence accessibility in contemporary times. The data show that older Black Americans are disproportionately impacted by higher rates of morbidity and mortality, yet we tend to under-utilize hospice and palliative care when we are living with serious illness.”

As in working with clients in any practice setting, starting the conversation about spiritual and cultural beliefs is crucial to supporting their goals, particularly at the end of life. “People have deeply rooted cultural beliefs about the ideal place to die, and in some circumstances it is very difficult to honor those beliefs in an inpatient facility,” Glajchen said. “For example, it is important to some families to burn incense to facilitate a peaceful transition for the soul of their departed loved one. But families may be prohibited from burning incense in a facility with oxygen. As social workers, we need to advocate, always learning and taking our cues from the person who is ill, and the family about what matters most to them.” Inviting patients and their family members to share their story, including their cultural and religious beliefs and values, can help social workers to increase cultural competence around end-of-life issues.

Role of the Social Worker

Social workers serving in end-of-life care often work on a multidisciplinary team, including physicians, nurses, and even death doulas. “Some death doulas are social workers, some are volunteers or hire themselves out to help be a person’s support at bedside,” explained Flowers. “Depending on a client’s friend and family circle, they may or may not benefit from the supportive presence of a death doula.” Social workers can hold this resource in mind as they approach end-of-life planning with clients.

On the multidisciplinary palliative or hospice care team, social workers play an integral role in advocating for the patient and family, coordinating services, and offering valuable social-emotional support during this often difficult time. “Social workers bring a unique perspective throughout the trajectory of illness, through skills in comprehensive biopsychosocial-spiritual assessment, navigating difficult conversations, managing complex psychosocial and family issues, managing the social determinants of health, and ensuring that treatment plans encompass the values and priorities of the person who is ill,” Glajchen said. “The social workers’ unique person-in-environment perspective and expert knowledge about resources are very much in line with the principles and priorities of palliative and end-of-life care.”

Beginning with assessment, social workers can help patients and families anticipate needs through different phases of treatment, from diagnosis, to intervention, to home care. Social workers can assist families in accessing practical needs like transportation, home-based care services, prescriptions, and adaptive equipment that can allow them to remain in their home, if that’s their desire.

Long before the end of life, social workers can begin valuable conversations to help clients identify their final wishes. This plan might include legacy-building activities, closing their lives by saying goodbye to loved ones, and meaningful life review. “Ask patients, invite them to share what they want. What does quality of life mean for them?” said Flowers. “Social work has a really integral role in that inquiry, as it is one of the few disciplines not poking and prodding at the person. We listen and invite them to tell their stories, acting as a liaison to the team to help the message come forward.”

Not only do social workers support and advocate for the dying person, but they also care for the family and caregivers. Making sure caregivers and family members know what to expect in the various stages of the dying process, how to respond to best help their loved one feel comfortable, and what to anticipate after the death in terms of bereavement and available grief support resources can make all the difference. “As we are taking physical care of the dying person, we are also teaching family members and caregivers what end of life will look like, and about grief and resilience,” Flowers said.

Overall, social workers are a rich part of the health care team at the end of life. “Social work is the most robust part of most insurance plans at the end of life,” Flowers explained. “We are a critical member of the team in terms of helping the family and patient look at what they need in order to stay home, or how to support the nursing home staff who are also impacted when there’s a death.”

Remote Monitoring

With more people choosing to die at home, remote monitoring has become a valuable tool in providing much-needed care. Telehealth became widely used during the COVID-19 pandemic, and was covered by Medicare during that time. Today, telepalliative care continues to be used as a supplement to in-person visits with patients who are dying at home. “In addition to expert pain and symptom management from trained professionals, expanding technologies like telehealth and remote monitoring are enhancing care delivery and the patient experience,” explained Dr. Steve Landers, CEO of NACH (the Alliance.)

While Medicare has pulled back its coverage of telemedicine since the end of the pandemic, it is important for social workers to advocate for its continued coverage at the same reimbursement rate as in-person visits, in order to increase access to care for those living in rural communities, and others who may find it difficult to attend visits in person. “I believe telemedicine is a very powerful adjunct tool, and there is a role for maintaining it if we want to promote dying at home as an option,” Glajchen said.

Considerations

While many find the benefits of dying at home outweigh the drawbacks, there are challenges to this approach. From financial constraints, to lack of social support, to poor insurance coverage for home-based services, families can face numerous barriers in supporting a loved one’s decision to die at home. “Home care is reimbursed at a much lower rate than inpatient care, and families face many out-of-pocket expenses for special food, uncovered medication, home health aides, transportation and even equipment,” explained Glajchen. “When it comes to hospice, many people are under the impression they will receive around-the-clock care at home, but the reality is more limited in terms of home visits and home care, leaving family caregivers to provide more care.” Social workers can take the lead in advocating for insurance reimbursement to financially compensate family caregivers, and broaden coverage for home-health services.

The burden of end-of-life care at home lies on the shoulders of the family. It is important to consider that home death is in the best interest of the insurance companies, as it reduces health care costs. The increase in home deaths also serves to decrease hospitals’ mortality rates, boosting their reputation on rankings like U.S. News and World Report, according to a 2022 article published in The New England Journal of Medicine. Holding insurance companies accountable in supporting the cultural shift toward home death is critical in making this choice more widely available to people at the end of life.

Ultimately, the rising popularity of home death serves to alleviate our taxed health care system. “As the U.S. population continues to age and the population aged 65 and older, as well as 85 and older, grows, care at home can shift the burden of care away from hospitals, helping to alleviate overcrowded emergency rooms and ensure access to critical services in rural communities,” said Landers. “Home care also saves the American health care system money, reducing unwanted hospitalizations and increasing patient and family satisfaction. In an already overburdened health care system, this is critical.”

While dying at home is becoming the preferred choice for many, it isn’t for everyone. “There does seem to be a cultural shift, but the shift is not necessarily culturally responsive,” Bullock said. “While there is increasing attention given to the benefits of dying at home, for many cultural groups, dying at home may not be a preference for spiritual or religious reasons. For others there are drawbacks. For example, going home from the hospital may leave the patient without someone to monitor and manage the symptoms of their illness or disease as needed. The care team should not assume that all patients prefer to die at home when at end-of-life and then simply proceed with a discharge plan in the absence of cultural consideration for the patient’s and family’s preferences.”

If a home death is not in the best interest of a patient, incorporating touches of home—their favorite music playing softly in the background, a cozy blanket from home, familiar prayers recited by the chaplain—can brings the comforts of familiarity to them, whether they are dying in the hospital, nursing home, or hospice facility.

The social worker’s role in walking with patients through the dying process, and supporting their loved ones in their experience of grief and loss, is a heavy, richly rewarding task. Whether a social worker is actively involved in palliative and hospice care, or serving in one of many other practice areas, death is the natural end of the human lifespan for all of us—ourselves, our family members and friends, and our clients. Being knowledgeable about the choices available at the end of life and competent in how to navigate this difficult season with genuine conversation and cultural competence, while honoring the dignity and worth of the person, is a charge assigned to all social workers.

“There’s no greater satisfaction than knowing you have helped somebody die well,” Glajchen said. “Knowing that the caregivers won’t be burdened by guilt or regret, and that we did the best we could to honor the wishes of our client.”

Heather Rose Artushin, LISW-CP, is on a mission to make a difference, one word at a time. Learn more at heatherrosewriter.com

Resources

Educating Social Workers in Palliative and End-of-Life Care (ESPEC): socialworkers.org/espec

National Hospice and Palliative Care Organization and National Alliance for Care at Home: allianceforcareathome.org

NASW Practice/Aging: socialworkers.org/Practice/Aging

The Conversation Project: theconversationproject.org

Five Wishes: fivewishes.org/about-five-wishes/

Prepare for Your Care: prepareforyourcare.org/