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 | Nov 9, 2025 | Blog, Care Keys - Nurses, Internal Marketing, Keys to Compassionate Care, Resources and Readings, Resources and Readings
Despite the clear benefits of hospice care, many patients are referred very late – sometimes in their final days of life – limiting the opportunity to benefit from its full scope. Two of the most commonly cited reasons for this delayed referral are:
- Clinician-related delays: Research shows that physicians often struggle with prognostication, lack of training in hospice eligibility and goals-of-care conversations, and uncertainty about when to refer. For example, a study found that physicians had difficulty determining prognosis and eligibility, which directly contributed to delayed hospice referral.
- Patient/family preference for curative treatment or denial of serious illness: Many families view hospice as “giving up,” and patients may seek more aggressive or curative treatments until very late. One review noted that among patients who delayed hospice, factors included desire to exhaust all treatment options and misunderstanding of hospice’s role.
Together, these barriers contribute to the pattern of late admission to hospice, which can undermine many of the benefits that hospice care is designed to provide.
Hospice care plays an essential role in ensuring patients with serious illness receive appropriate, coordinated, and compassionate care near the end of life. Yet, despite its well-documented benefits, hospice care is often initiated too late to deliver its full value to patients, families, and the healthcare system.
The Impact of Hospice Care on Outcomes and Cost
A 2023 analysis conducted by an independent research organization examined Medicare data to evaluate the impact of hospice care on outcomes and costs. The findings provide a clear picture of why timely hospice enrollment matters.
Patients who enrolled in hospice experienced lower rates of hospitalization, fewer emergency department visits, and reduced use of intensive medical interventions in the final months of life. These patients also reported higher satisfaction with care and better symptom management. Family members experienced fewer adverse emotional and financial effects during and after the end-of-life period.
From a systems perspective, hospice care was associated with significant cost savings. The study found that Medicare spending in the last year of life was approximately 3% lower for patients who used hospice than for those who did not. For patients enrolled for longer periods – particularly six months or longer – total costs were reduced by as much as 11%. The analysis also showed that after approximately 11 days of hospice enrollment, cost savings began to outweigh the costs of care, emphasizing the importance of timely referral.
These findings reinforce a central principle of hospice care: early involvement leads to better outcomes. Short hospice stays, often measured in days rather than weeks or months, limit the ability of interdisciplinary care teams to manage symptoms, provide counseling, and effectively coordinate family support. Early referral allows the full hospice model – which integrates medical, emotional, and spiritual care – to operate as intended.
Bringing the Findings Into Practice
For healthcare providers, this evidence highlights the need to normalize early discussions about hospice eligibility. For families, it underscores the importance of understanding that hospice is not a signal of giving up but a shift toward comfort, coordination, and quality of life. For policymakers and payers, it demonstrates that strengthening the hospice care model can deliver measurable value across the healthcare continuum.
Hospice care remains one of the few interventions that simultaneously improves outcomes, supports families, and reduces overall healthcare spending. Ensuring that patients are referred early enough to experience those benefits should be a shared goal for clinicians, organizations, and communities alike.
References
by editor | Nov 9, 2025 | Blog, Care Keys - Nurses, Internal Marketing, Keys to Compassionate Care, Resources and Readings, Resources and Readings
The New England Journal of Medicine recently published a Perspective titled “What Is Hospice?” – a piece that captures, in striking detail, what hospice truly means beyond the policies, programs, and checklists that are so often discussed in healthcare.
It begins with a familiar question from a patient: “What is hospice?” The physician’s answer is the one that is often received: hospice is a service for people with less than six months to live who choose comfort over cure. It provides care through a team of doctors, nurses, social workers, and counselors who guide patients and families through the final stage of life.
But as the Perspective unfolds, the author takes the reader deeper – into the emotional terrain that families, clinicians, and patients navigate together. Hospice, the physician reflects, isn’t just medical care. It is the quiet moments at home, the scent of a familiar meal, the sound of family laughter between tears. It’s the deep breath before goodbye.
The piece reminds us that hospice is not surrender. Rather, it is transformation. It shifts the focus from fighting disease to embracing the life that remains.
“Hospice is always sad; if all goes well, painless; and sometimes, heartbreakingly beautiful.”
That sentence, near the end of the essay, lingers long after you finish reading. Because it’s true. Hospice is complex and sacred. It’s where love and loss coexist. Where families learn that letting go can be an act of care.
The Everyday Reality of Hospice
For those who work in hospice, the author’s story feels achingly familiar. These are every day scenes: The bag of medications on the kitchen counter. The photo albums on the table. The phone calls to distant family members. The dog who refuses to leave the bedside.
These moments aren’t clinical data points. They are the essence of hospice care. They remind us that hospice happens not only in facilities or inpatient units but also in living rooms, bedrooms, and hearts.
And yet, even professionals sometimes struggle to explain hospice in a way that captures its full truth. This Perspective does what definitions cannot. It shows hospice as both a medical philosophy and a deeply human experience.
Reflections to Consider
This piece invites all of us – hospice professionals, caregivers, and community members – to pause and reflect:
- How do we talk about hospice to families who are afraid it means giving up?
- How can we help people see hospice not as an ending but as a way to live fully until the end?
- How can caregivers hold space for both grief and grace at the same time?
These are not easy questions but they are the ones that guide the sacred work of hospice professionals.
A Gentle Reminder
The New England Journal of Medicine Perspective is a beautiful reminder that hospice is not a destination; it’s a journey of presence, compassion, and understanding. It’s the place where medicine meets meaning.
Hospice workers are not just managing symptoms. Hospice workers are helping people find comfort, connection, and peace when life is at its most fragile.
Hospice, in the author’s words, is “safe harbor after an arduous journey.” Perhaps, that’s the best definition of all.
by editor | Nov 3, 2025 | Blog, Care Keys - Nurses, Internal Marketing, Keys to Compassionate Care, Resources and Readings, Resources and Readings
A shift is unfolding across the United States as more states are enacting Medical Aid in Dying (MAID) laws. This legislation allows terminally ill, mentally capable adults with a prognosis of six months or less to request medication to end their lives peacefully.
As of 2025, twelve U.S. jurisdictions have legalized this option in some form. Each has its own requirements, safeguards, and timelines. For those working in hospice and palliative care, these developments raise complex questions – not only about law and medicine, but about the very heart of the hospice mission: to bring comfort, dignity, and peace at the end of life.
The Shared Values Beneath Different Choices
At first glance, hospice and medical aid in dying may appear to represent opposing approaches. Hospice care emphasizes natural dying, symptom relief, emotional support, and holistic presence without hastening or prolonging life. MAID laws, by contrast, allow a terminally ill individual to take an active step toward death, usually when suffering feels unbearable.
Yet beneath those surface differences lies a shared foundation: autonomy, dignity, compassion, and the relief of suffering. Both hospice and MAID reflect the human desire to ensure that the end of life aligns with personal values and that suffering is minimized as much as possible.
For many patients, hospice care provides the compassionate path. It offers an opportunity to live fully until natural death, supported by a team focused on comfort and peace. For others, even with the best hospice care, fears about loss of control, prolonged suffering, or existential distress may lead them to explore the option of medical aid in dying.
The challenge for hospice professionals is not to judge these choices but to listen deeply and help each person make decisions consistent with their beliefs, hopes, and thresholds for suffering.
Why Hospice Voices Matter in This Conversation
The growing presence of medical aid in dying laws represents an inflection point for the hospice field. These laws are reshaping how the public, policymakers, and clinicians think about dying. Without hospice leadership in the dialogue, the conversation risks being defined without the nuance and humanity that hospice brings.
Hospice professionals possess an understanding of dying that few others share. They recognize that the experience of dying is not a policy debate or a philosophical abstraction. Rather, it is a lived, embodied, relational process. That experiential knowledge is precisely what is missing from most legislative and public discourse.
Hospice voices matter.
- They bring evidence and perspective about what high-quality end-of-life care can achieve.
Much of the public support for MAID arises from fear. Fear of pain, of abandonment, of a medical system that does not listen. Hospice clinicians can ground public understanding in the reality of what’s possible when comfort care is practiced with excellence, when suffering is addressed comprehensively, and when patients are genuinely seen. Without this grounding, MAID can be mistaken as the only path to control, rather than one among several options for a dignified death.
- They are positioned to help shape ethical and clinical standards at points of overlap.
In states where MAID is legal, hospice patients will inevitably raise questions about it. Clear guidance is needed on how hospice teams should respond, what boundaries exist between hospice practice and MAID protocols, and how organizations can protect staff conscience while respecting patient autonomy. These are operational, not theoretical, challenges and hospice leadership is uniquely suited to address them.
- They can advocate for equity in end-of-life care.
MAID conversations often assume equal access to symptom control, palliative expertise, and psychosocial support. Hospice professionals know that access is far from universal. If the right to die becomes easier to access than the right to high-quality hospice care, an ethical imbalance emerges. Hospice advocacy must insist that relief of suffering through care remains a guaranteed, accessible right, not a privilege.
- They model what compassionate neutrality looks like.
Within teams, families, and communities, opinions on MAID will vary. Hospice professionals have long practiced the discipline of presence. That unique ability to hold space without persuading or condemning. That skill is invaluable in a polarized cultural moment.
Hospice need not reassert its relevance; rather, it must assert its authority — not through moral argument, but through the wisdom earned from decades of walking beside the dying. The national dialogue about medical aid in dying will be stronger, safer, and more humane when informed by hospice experience.
What Hospice Leaders and Advocates Should Be Thinking About
As more states consider such legislation, several questions deserve careful consideration:
- Education and Training:
How can hospice organizations prepare staff to discuss MAID knowledgeably and compassionately, even when direct participation is not permitted?
- Ethical Consistency:
What guiding principles can help teams balance hospice’s philosophy of neither hastening nor postponing death with respect for patient autonomy in states where MAID is legal?
- Communication and Trust:
How can teams maintain open, nonjudgmental dialogue with patients and families, regardless of their decisions?
- Bereavement and Family Support:
What does bereavement care look like when MAID has been part of a loved one’s end-of-life journey?
- Institutional Policy:
Should hospice programs establish clear statements outlining their stance, participation limits, or referral procedures to prevent confusion among staff and families?
- Public Education:
How can hospice organizations help the public understand that hospice and MAID are not opposing forces and that hospice remains an essential resource for all who face serious illness, regardless of legal options?
A Call for Compassionate Dialogue
The legalization of medical aid in dying does not diminish hospice’s relevance. If anything, it amplifies hospice’s essential wisdom: that dying is not solely a medical event, but a profoundly human one.
The task before hospice professionals is to remain anchored in compassion. Laws and policies will continue to evolve, but the core of hospice – presence, empathy, and holistic care – is timeless.
Rather than withdrawing from the discussion, hospice professionals have an opportunity to shape it, ensuring that every conversation about dying – in any form – remains centered on love, respect, and the relief of suffering.
The future of end-of-life care will include many choices. Hospice ensures that compassion remains one of them.
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
