by editor | Jan 19, 2026 | Care Keys - Nurses, Hospice Research Articles, Keys to Compassionate Care, Patient Care
A recent study published in PLOS ONE explores how music influences the way the brain processes, learns, and remembers information. The researchers found that listening to music – especially music that is familiar and predictable – can significantly affect attention, memory encoding, and cognitive sequencing. In contrast, unfamiliar or irregular music required greater mental effort and altered how information was processed. These findings highlight that music is not simply a background experience. Rather, it is an active stimulus that shapes how the brain functions.
While the study focuses on cognitive mechanisms rather than clinical care, it adds to a growing body of evidence demonstrating music’s powerful impact on the human brain. Music engages multiple neural systems simultaneously, influencing emotion, memory, attention, and perception. This helps explain why music can be grounding, comforting, and emotionally meaningful – particularly during times of stress, illness, or transition.
Implications for Hospice Clinical Teams
For hospice clinical teams, this research reinforces what is often observed at the bedside: music can play a meaningful therapeutic role at the end of life. Music therapy in hospice is not about performance or entertainment; it is about comfort, emotional expression, symptom management, and connection. Familiar music may help reduce anxiety, support orientation, evoke memories, and create moments of calm or shared meaning for patients and families. Understanding how music affects the brain can help clinicians appreciate why patients may respond so strongly to certain songs or musical styles.
This research also invites reflection on how music is incorporated into interdisciplinary hospice care. Thoughtful use of music – whether through formal music therapy services or mindful integration into patient routines – can support holistic, person-centered care. As hospice teams continue to focus on quality of life, music offers a non-pharmacologic, deeply human tool that aligns with the goals of comfort, dignity, and presence.
Questions for the Hospice Clinical Team to Consider
As hospice care continues to emphasize whole-person, interdisciplinary, and evidence-informed practice, this research invites clinicians to pause and reflect on how music is experienced and used within patient care. Music often emerges naturally in hospice settings – through personal playlists, family memories, cultural traditions, or the work of music therapists.
Thoughtfully considering these moments can help teams better understand how music supports comfort, emotional expression, cognitive engagement, and connection at the end of life. The following questions are offered to encourage reflection, discussion, and collaboration across disciplines. The goal is to enhance patient- and family-centered care.
- How do we currently assess a patient’s relationship with music and musical preferences?
- In what ways might familiar music support comfort, emotional expression, or symptom relief for our patients?
- How can interdisciplinary teams collaborate more intentionally with music therapists?
- Are there opportunities to better educate families about the therapeutic role of music at the end of life?
Additional Reading Material
by editor | Dec 7, 2025 | Hospice Research Articles, Keys to Compassionate Care
This large-scale study analyzed 4,216 diffusion MRI brain scans from individuals aged 0 to 90. The aim of the study was to map how the brain’s structural wiring – the connections that allow different regions to communicate – changes throughout the entire human lifespan. The researchers examined how efficiently the brain moves information, how much it divides into specialized subsystems, and how central or influential key regions are.
The study discovered that brain development does not unfold as a simple rise and fall. Instead, it moves through five distinct stages, each beginning at a major turning point around ages 9, 32, 66, and 83.
- From birth to age 9, the brain is rapidly reshaping and refining its connections as it builds the foundations for childhood thinking and learning.
- Between ages 9 and 32, the brain becomes more organized and coordinated, supporting the enormous growth in reasoning, emotional maturity, and independence that occurs during adolescence and early adulthood.
- From 32 to 66, changes happen more gradually as the brain settles into a long period of relative stability in structure and function.
- Between 66 and 83, the brain begins to show clearer signs of aging, with some abilities staying strong while others weaken, reflecting the uneven changes many people experience in later life.
- After age 83, the usual patterns become much less reliable. The brain’s aging process becomes highly individual, explaining why people in their late 80s and 90s often differ greatly from one another in memory, clarity, and daily functioning.
What does this mean for hospice teams?
For hospice teams, the study’s finding that the brain becomes far less predictable after age 83 may resonate deeply with clinical experience. The clinical team likely sees patients of the same age who differ markedly in cognition, awareness, engagement, emotional responsiveness, and pace of decline. This research suggests that such variability is not unusual; it is biologically expected in the final stage of life. Recognizing this invites the question:
- How might care shift if we assume that each patient’s brain is aging in its own one-of-a-kind way rather than following a standard pattern?
And because families often struggle to understand sudden changes or fluctuating cognition, it also prompts us to ask:
- In what ways can this knowledge be used to help families reframe late-life changes not as surprising inconsistencies, but as natural expressions of highly individualized brain aging?
Seeing late-life neurobiology through this lens may guide teams toward even greater patience, flexibility, and attunement.
The study also shows that from roughly ages 66 to 83, the brain becomes more modular. What this means is that certain abilities may remain strong while others weaken. For patients in hospice care (or even as people age), you often see individuals who can still pray, sing, joke, or recall childhood memories even as problem-solving, attention, or short-term memory decline. This pattern encourages us to consider:
- How can we better identify and amplify these preserved abilities to support connection, dignity, and emotional well-being?
At the same time, many family caregivers – especially adult children – are themselves navigating demanding life stages that affect their own cognitive and emotional bandwidth. Understanding the brain’s lifelong shifts raises another reflection:
- Could recognizing the developmental pressures on caregivers help us extend more empathy and support when they appear overwhelmed, conflicted, or emotionally stretched thin?
In appreciating the parallel journeys of patients and families, the team becomes better positioned to offer care that honors the full human context of end-of-life experiences.
References
- Link to full downloadable article
by editor | Nov 19, 2025 | Hospice Research Articles
Abstract
Importance Evidence is limited regarding whether end-of-life care for individuals with dementia varies by race and ethnicity, and whether observed variations can be explained by differences in the physicians providing their care.
Objective To evaluate end-of-life care among individuals with dementia across racial and ethnic groups, and to investigate whether care variations are explained by differences in treating physicians.
Design, Setting, and Participants This cohort study used national, population-based claims data from a 20% random sample of Medicare fee-for-service beneficiaries aged 66 years or older with a diagnosis of dementia who died between 2016 and 2019. Data were analyzed from January 2024 to June 2025.
Main Outcomes and Measures Emergency department, hospital, and intensive care unit use, mechanical ventilation or cardiopulmonary resuscitation, and feeding tube placement in last 30 days of life; death in acute care hospital; hospice use and palliative care counseling in last 180 days of life; and any billed advance care planning before death.
Results Among 259 945 decedents with dementia (mean [SD] age, 85.8 [8.0] years; 60.4% female), 8.3% were non-Hispanic Black, 4.4% were Hispanic, and 87.3% were non-Hispanic White. Compared with non-Hispanic White decedents, non-Hispanic Black decedents were more likely to receive emergency department (difference, 5.7 percentage points [pp]; 95% CI, 5.0-6.4 pp), hospital (difference, 4.0 pp; 95% CI, 3.3-4.7 pp), intensive care unit (difference, 4.3 pp; 95% CI, 3.7-4.9 pp), mechanical ventilation or cardiopulmonary resuscitation (difference, 3.8 pp; 95% CI, 3.3-4.3 pp), and feeding tube placement (difference, 1.8 pp; 95% CI, 1.5-2.1 pp) care, as well as die in a hospital (difference, 3.5 pp; 95% CI, 2.9-4.1 pp). Non-Hispanic Black decedents were less likely to use hospice (difference, −6.1 pp; 95% CI, −6.8 to −5.4 pp) and more likely to receive palliative care counseling (difference, 3.2 pp; 95% CI, 2.6-3.9 pp) and billed advance care planning (difference, 1.8 pp; 95% CI, 1.2-2.3 pp) than non-Hispanic White decedents. Similar patterns were observed among Hispanic decedents. Variations in end-of-life care remained qualitatively unchanged when comparing decedents treated by the same physician.
Conclusions and Relevance Findings from this cohort study suggest that non-Hispanic Black and Hispanic decedents with dementia received more intensive end-of-life care despite higher rates of billed advance care planning and palliative care counseling than non-Hispanic White decedents. Observed racial and ethnic variations were not explained by differences in the physicians treating them.
Discussion
This study looked at how older adults with dementia in traditional Medicare were cared for at the end of life, and whether patterns differed for Black, Hispanic, and White patients. Using claims data from nearly 260,000 people who died between 2016 and 2019, the authors measured things like ER visits, hospitalizations, ICU stays, feeding tubes, CPR/ventilation, death in the hospital, hospice use, palliative care consultations, and billed advance care planning. They found that Black and Hispanic decedents with dementia were more likely than White patients to receive intensive hospital-based care in the last 30 days of life and to die in the hospital, and they were less likely to use hospice in the last six months of life. At the same time, Black and Hispanic patients were actually more likely to have billed advance care planning and palliative care counseling documented.
To understand whether “which doctor you see” explains these differences, the researchers compared patients who were cared for by the same primary care physician. The racial and ethnic gaps in intensive end-of-life care and hospice use mostly stayed the same, meaning physician practice style only explained a small part of the disparity. Over the four-year period, differences in the rates of billed advance care planning and palliative care counseling between White and Black/Hispanic patients grew, but disparities in intensive hospital use did not meaningfully shrink.
The authors conclude that structural and social factors such as access to services, timing of dementia diagnosis, cultural values, past experiences with the health system, and systemic inequities are likely driving these patterns, rather than just individual doctors’ preferences or skills.
For hospice teams, this article is a clear reminder that many Black and Hispanic people living with dementia still reach the end of life in the hospital, even when conversations about goals of care and palliative care are happening.
Practical questions to bring back to your agency include: Are we seeing disparities in our own hospice enrollment and lengths of stay for patients with dementia by race or ethnicity? How early are we connecting with families of Black and Hispanic patients before the crisis ED visit, or only once they are already hospitalized? Do our educational materials, community outreach, and marketing speak directly – and respectfully – to diverse communities’ concerns about “giving up,” spiritual beliefs, and mistrust of the system? Are we partnering with hospitalists, ED teams, nursing homes, and primary care practices that care for large numbers of Black and Hispanic dementia patients so that when palliative and advance care planning conversations occur, hospice is presented as a real, trusted option and not an afterthought?
These are the kinds of concrete, agency-level questions this paper invites hospice nurses, administrators, and marketers to wrestle with.
Link to Full Article
Link to article: End of Life Care for Older Adults with Dementia
by editor | Oct 27, 2025 | Blog, Grief & Loss - Aides, Grief & Loss - Chaplain, Grief & Loss - Nurses, Grief & Loss - Social Workers, Grief and Loss, Hospice Research Articles, Keys to Compassionate Care
Loss is inevitable when working in end-of-life care. But the grief that follows is not simply the family’s burden alone. The way care is delivered before, at, and after the death of a loved one significantly influences whether bereavement becomes a manageable process or a complex, prolonged struggle. Qualitative research highlights three influential domains: personal interactions with health-care workers, the quality and timing of information delivered, and system-level functions around death notification and bereavement support.
Understanding Bereavement: Not a Uniform Path
Grief is more than sadness. It manifests as emotional, physical, cognitive, social, psychological and behavioral responses. Its intensity and course depend on many factors: the relationship to the deceased, attachment style, mental-health history, whether death was sudden or expected, the setting of death, and social support available.
Protective factors exist: prior experience of loss, living support networks, strengths identified by the bereaved themselves, and practical support all improve outcomes. The role of healthcare workeris now seen as vital to activating these protective factors or mitigating risk.
How Healthcare Workers Influence the Bereavement Experience
Personal Interactions and Honor-Centred Care
The relational dimension matters: When families observe healthcare workers interacting with their sick family members “as if they are present and conscious”, it conveys recognition of personhood, respect and relational worth.
Conversely, when families experience dismissive language, unfamiliar faces at critical moments, or a change in staff that interrupts continuity, perceptions of care shift negatively: the sense of being “left behind” or disregarded can aggravate grief.
Information, Communication and Narrative Coherence
Families need clear, honest, timely information about prognosis, symptom progression, and what to expect in the dying process. When such information is absent, families report an emotional “hole” in their narrative of loss: “Dad went there, he passed away and that was the end of the story.”
Education about grief itself — helping families understand how different people grieve, what reactions may unfold, and what support is available — can normalize experiences and reduce distress. Healthcare workers who engage in anticipatory planning and family education serve a critical function in preventing complicated grief.
System-Level Issues and Bereavement Continuity
Even when individual clinicians do well, system problems can undermine outcomes. For example, hospital visiting-policy confusion, lack of inter-service communication, inadequate death-notification workflows, and absence of follow-up by care teams can all contribute to complicated grief.
Bereavement support must be embedded structurally and not left solely to goodwill. While many families will navigate grief with community/family supports, a moderate number require non-specialist professional help, and a small but significant minority will need specialist care for prolonged grief disorder.
Implications for Hospice and End-of-Life Practice
Training & Education: Healthcare workers benefit from communication skills training, anticipatory bereavement care education, and guidance in dignity-conserving care.
Protocols & Follow-Up: Organizations should implement clear workflows: condolence letters, follow-up calls, opportunity for family meetings after death, and referral pathways for those at risk of complex grief.
Integration of Bereavement into Care Continuum: Hospice care should explicitly view bereavement support as part of its service, not afterthought. The transition from life into death and then into community/family grief must be managed.
Organizational Systems: Review visiting policies, death-notification systems, documentation handovers, cross-service communication and ensure that families always know what to expect. Community resources and culturally-tailored supports must be flagged especially for vulnerable populations.
Conclusion
The dying process and what follows are inseparably linked. Healthcare workers do more than manage symptoms. They influence how families make sense of loss and build the next chapter of their lives. By prioritising dignified presence, transparent communication, and systemized bereavement support, we honor not just those who die but the ones left behind. The evidence is clear: when care ends, compassion must continue.
References
by editor | Sep 28, 2025 | Hospice Research Articles
Background
While home-based hospice care seeks to reduce suffering at the end of life (EoL), patients continue to experience a high symptom burden. High symptom burden contributes to adverse outcomes, including patient suffering, burdensome care transitions, and caregiver burden. Yet, most caregivers lack formal education in patient symptom management despite providing up to 65 h of care per week. Interventions that provide symptom support and education to caregivers could improve EoL outcomes for patients and caregivers.
Methods
We conducted a pilot randomized controlled trial (N = 80) in a hospice organization to assess the feasibility, acceptability, and preliminary efficacy of the Improving Home Hospice Management of End-of-life Symptoms (I-HoME) intervention. This caregiver-focused intervention aims to reduce patient symptom burden through weekly tele-visits with a nurse practitioner and caregiver educational videos to provide symptom support and education.
Results
The mean age of caregivers (N = 80) was 60.3 (standard deviation ± 12.1); with a majority being women (79%) and children of the patient (67%). In the I-HoME group (n = 40), a total of 121 of a possible 145 tele-visits (83%) were completed. Over 96% of caregivers were either satisfied or very satisfied with the tele-visits. Eighty-three percent agreed or strongly agreed that it prepared them to manage symptoms better, while 88% agreed or strongly agreed that the intervention increased their confidence in managing symptoms. The average reduction in patient symptom burden, as measured by the Edmonton Symptom Assessment Scale, for the intervention group who received all six visits was 6.6 points compared to 2.9 for the control group.
Conclusions
The I-HoME intervention was feasible to implement in the home hospice setting and acceptable to caregivers and hospice staff. Future efficacy trials are needed to determine whether this caregiver-focused intervention, which provides symptom support and education, can measurably improve patient and caregiver outcomes in the home hospice setting.
Link to Full Article
Link to article: iHome Pilot Study
by editor | Jul 23, 2025 | Hospice Research Articles, Resources and Readings
Abstract
Palliative care is an approach for seriously ill patients. Illnesses and knowledge of limited life expectancy often limit self-determination among patients. Along with the concepts of patient autonomy and heteronomy, care is central to the everyday personal and institutional lives of the ill. However, the term ‘care’ has not yet been systematically examined. I argue for a clear distinction between care and paternalism in the discussion about the individual approach to a situation in everyday life, which are two different forms of action in which the patient’s will is considered to varying degrees. The (at least ethical) evaluation, and thus the individual situational need for justification of an action, is different for both forms of action, even if both forms can promote the autonomy of the patient. However, not ‘all’ patient requests are fulfilled through palliative care. There are (justified and perhaps necessary) limitations in the fulfilment of the patient’s goals on the part of those providing care. However, in the context of the discussion on care, these limitations also require a well-founded justification for each individual case.
Discussion
This article digs into what we really mean by “care” in palliative care and why that matters ethically. The author argues that care isn’t just “being helpful” or “being kind”. Rather, it is a specific kind of action where the intention lines up with the patient’s own wishes, values, and goals. When professionals act “for the patient’s good” but against their will or without truly incorporating their values, that’s not care – it’s paternalism. Both care and paternalism may relieve suffering or even support autonomy, but they require different levels of justification and should be named honestly as different types of actions.
The paper shows how autonomy in palliative care is more than a signature on a consent form. Autonomy includes “freedom from” pressure and unnecessary interference and “freedom to” shape one’s life and daily routines in line with personal values, even when seriously ill. Because patients are often dependent – physically, emotionally, socially – care necessarily happens in relationships: with staff, family, and the wider system. Good care responds to the person’s expressed needs, is sensitive to context and culture, and accepts that there is rarely one “objectively right” answer. Paternalism, by contrast, appears when the professional’s view of what is best quietly displaces the patient’s intentions, sometimes through nudging, subtle pressure, or “we’ll just decide for you.” The author proposes practical questions teams can ask about each action: Do we really know the patient’s will? Is it authentic? Whose good are we pursuing? What means are we using – gentle information, persuasion, or coercion?
For hospice clinicians the key takeaway is that how we care is as important as what we do.
Clinically, this means pausing to check: Are we truly aligning our symptom management, visit schedules, and care routines with the patient’s story and values or are we slipping into “we know best”?
For administrators, the agency may consider its: Do our policies, documentation demands, and visit targets leave room for relational, patient-led care, or do they push staff toward paternalistic shortcuts?
For marketing and outreach, a core question is: Does our messaging frame hospice as “taking over” and deciding for families, or as walking alongside them and empowering them to live as fully and authentically as possible to the end of life?
Teams could use this article as a springboard for reflection: pick a recent difficult case and ask together – where were we practicing genuine care, and where did we cross into paternalism, even with good intentions?
Link to Full Article
Link to article: Care in Palliative Care
