by editor | Dec 8, 2025 | Keys to Compassionate Care, Resources and Readings, Resources and Readings
You don’t have to be a policy expert to notice something basic and uncomfortable about health care in the United States:
Your chances of getting timely, good care change a lot depending on where you live.
Roughly one in five people in the U.S. live in rural areas. Yet the system they interact with can look very different from what someone in a big city sees.
The “Rural Mortality Penalty”
Let’s start with outcomes, not opinions. Rural residents are more likely to die early from five leading causes of death: heart disease, cancer, unintentional injuries, chronic lower respiratory disease, and stroke. By 2019, death rates in rural areas were 21% higher for heart disease, 15% higher for cancer, and 48% higher for chronic lung disease compared with urban areas. Over a 20-year period, overall death rates fell in both rural and urban communities. However, rural areas never caught up to urban areas. In 2019, the age-adjusted mortality rate was about 834 deaths per 100,000 people in rural counties versus 665 per 100,000 in large metropolitan ones.
These numbers are sometimes summed up as the “rural mortality penalty”: living in a rural county is, on average, associated with a shorter life. This isn’t about rural people making worse choices or caring less about their health. It’s about what they can realistically reach and rely on when they need care.
Fewer Providers, Thinner Safety Nets
The basic building blocks of health care – doctors, nurses, clinics, hospitals – are simply less available in rural areas than in cities. Workforce data summarized by NIHCM show that urban areas have about 33 health care providers for every 10,000 people. In contrast, rural areas have only about 13 providers per 10,000. At the same time, only about 12% of physicians practice in rural communities, even though close to 20% of the U.S. population lives there. In other words, a significant share of people are depending on a much smaller pool of clinicians.
On top of that, many rural hospitals are in serious financial trouble. Between 2005 and 2023, at least 146 rural hospitals either closed or stopped providing inpatient care, and 81 of those shut down completely. An analysis from the Sheps Center counts 195 rural hospital closures or “conversions” since 2005, including 110 full closures. By 2023, about 44% of rural hospitals were operating with negative margins, compared with 35% of urban hospitals. What this means is that nearly half of rural facilities were losing money on their core operations.
When a rural hospital loses its inpatient unit or closes entirely, the impact is not theoretical. It means the nearest emergency room, intensive care unit, or surgery team is suddenly much farther away, and an already thin safety net for the community becomes even more fragile.
Maternity Care: Whole Counties With Nowhere to Go
One area where the gap between rural and metropolitan care is especially stark is maternity care. More than 2 million women of childbearing age live in U.S. counties with no maternity care at all. That means no hospital offering labor and delivery, no birth center, and no obstetric provider. These places are often referred to as “maternity care deserts.” According to the Rural Health Information Hub, about 59% of rural counties fall into this category.
Behind those numbers are very concrete realities. Pregnant people may have to drive 60 to 90 minutes or more just to get to prenatal appointments or to reach a hospital when they go into labor. Some babies are born in emergency rooms or even in ambulances because the nearest hospital with obstetric services is simply too far away to reach in time. Not surprisingly, these conditions are linked to higher risks of preterm birth, complications, and maternal deaths in the communities that lack nearby maternity care. It’s difficult to argue that we value mothers and babies equally everywhere when entire rural counties have no local place to give birth.
Not Just Distance: The Daily Friction of Getting Care
It’s tempting to think of rural health problems as “just” an issue of longer drive times. But distance interacts with everything else: work, money, childcare, energy, illness.
Some examples of what the data and reports show:
Chronic disease management
- Diabetes rates can be up to 17% higher in rural areas, and rural residents also carry heavier burdens of heart disease and lung disease.
- Managing these conditions usually requires regular checks, labs, medication adjustments, and self-management support. When the clinic is far away and appointments are limited, people are more likely to miss visits or let “routine” care slide until it becomes an emergency.
Emergency care
- Rural emergency departments cover huge geographic areas, often with limited ambulance capacity. When the nearest hospital closes, response and transport times increase, and studies associate that with worse outcomes for critical conditions like heart attacks, strokes, and major trauma.
Mental Health
- Rural communities often have very few or no local mental health clinicians. Stigma can be higher, and privacy is harder to protect in small towns. If the closest therapist or psychiatrist is hours away, it’s much easier to postpone or forgo care altogether.
None of this shows up when we only ask, “Is there a hospital in the county?” The real question is: Can people realistically use it when they need to?
Telehealth Helps – But Only If You Can Get Online
We often hear some version of: “Telehealth will solve this. People in rural areas can just see doctors on video.” Telehealth really can make a difference, especially for follow-up visits, mental health care, and specialist consults that would otherwise require long trips. But there are real limitations that show up quickly once you look at how people actually live.
During the pandemic, surveys found that more than one-third of rural residents saw broadband and computer access as major obstacles to using telehealth. Rural broadband is often slower, less reliable, or simply unavailable. Even in places where the internet technically exists, people may not have the right devices, may be limited by data plans, or may not feel comfortable using the technology in the first place. Telehealth is a helpful tool, but it doesn’t magically erase the shortage of local clinicians, the long distances to imaging or lab services, or the need for in-person care for things like labor, surgery, or acute emergencies.
This Isn’t About Blaming Rural Residents or Idolizing Cities
Of course, cities are not perfect. Plenty of people in metropolitan areas struggle to access care because of cost, insurance, racism, language barriers, or other reasons. What stands out in the rural data is the pattern:
- Fewer providers per person
- More hospital closures and service cuts
- Longer distances to basic services
- Higher rates of preventable illness and early death
So we need to ask ourselves: Are we okay with this gap being as large as it is?
Because at some level, this is not a mystery. We know rural residents are more likely to die from major causes. We know many rural counties have no maternity care. We know there are half or a third as many providers per person.
The more we learn, the harder it is to treat these differences as just an unfortunate side effect of geography.
Equity Questions to Ponder
All of this leaves us with some serious questions to ponder. These are less about policy details and more about basic fairness:
- If the data tell us that living in a rural area is linked to higher chances of dying from common, treatable conditions, what does it say about our priorities if we treat that as acceptable?
- Should good health care be thought of as something that naturally clusters in big cities, or as something every community deserves – even if it costs more per person to deliver in sparsely populated areas?
- If we’re comfortable with a system where rural residents have fewer providers, fewer hospitals, and more “care deserts,” would we be just as comfortable if the same pattern was happening systematically by race or income instead of geography?
- How far would you be willing to travel, regularly, for chemotherapy, prenatal care, dialysis, or mental health counseling? Would you be able to keep your job, care for your family, and afford those trips?
- If we were rebuilding our health system from scratch and someone proposed a plan in which rural communities consistently had worse access and worse outcomes, would we ever accept that? Or, are we primarily drifting into this situation because changing course is hard?
One does not need to be a policy expert to care about these questions. One simply needs to believe that where someone lives should not quietly decide how long and how well they get to live.
Further Reading (for readers who want to dig deeper)
- Rural Health Needs in America: Challenges & Solutions, NIHCM, 2025
- Rural Health: Addressing Barriers to Care, NIHCM, 2023
- Rural Areas Have Fewer Health Care Providers, NIHCM
- Nowhere to Go: Maternity Care Deserts Across the US, March of Dimes, 2024
- 146 rural hospitals closed or stopped providing inpatient services from 2005 to 2023 in the United States, USDA ERS, 2025
- Rural Health Disparities, Rural Health Information Hub
- Continuing Challenges in Rural Health in the United States, PMC, 2020
- Rural hospital closures and nursing home outcomes, J Rural Health, 2025
- Leading Causes of Death in Rural America, CDC, 2024
by editor | Nov 30, 2025 | Blog, Care Keys - Aides, Care Keys - Nurses, Care Keys - Social Workers, Keys to Compassionate Care
Pain assessment is foundational to clinical care, but nowhere is it more central – or more urgent – than in hospice. The familiar questions “How much pain are you in right now?” and “Is it better or worse than last week?” are routine. Yet, they are often quite difficult to answer and often yield answers that are harder to interpret than clinicians expect.
Patients frequently pause, hedge, or give numbers that appear inconsistent with clinical observations. This is not because patients are unreliable or evasive. It is because measuring pain is inherently difficult and measuring changes in pain over time is even harder. These challenges apply across all clinical settings – primary care, oncology, orthopedics, emergency medicine – but they intensify as patients near the end of life when physical decline, emotional complexity, and cognitive fluctuations overlap.
Understanding why pain scoring is difficult helps clinicians interpret patient reports more accurately, communicate more effectively, and make better decisions about comfort measures.
Why Pain Is Intrinsically Hard to Quantify
Pain is not a fixed or easily measurable quantity like blood pressure or temperature. It is a subjective, multidimensional experience shaped by tissue damage, neural sensitization, emotional state, fear, attention, sleep, cultural background, personal history, and the immediate environment. Even cognitively intact, well-rested patients must carry out several complex mental operations to answer the deceptively simple question, “What number is your pain?”
A patient must attend to sensations that fluctuate moment by moment and then map that shifting internal experience onto an abstract numerical scale that lacks any universal meaning. They must decide what constitutes “mild,” “moderate,” or “severe” for them personally, while also attempting to infer what their clinician is hoping to understand. All of this happens while the patient is experiencing the very symptom they’re trying to quantify, which can affect focus and emotional clarity.
Because the process is subjective and influenced by countless variables, two individuals with similar pain intensities may give very different ratings. Further, the same patient may provide different numbers for similar sensations on different days. A pain score is always a momentary interpretation, not a stable biological measurement.
Internal Anchors Shift – Sometimes Quickly
Pain scales assume stable reference points: zero as no pain, ten as the worst imaginable. However, patients rarely use these reference points consistently. Some patients compare to the worst pain they have ever experienced. Others, compare to what they think “bad pain” should feel like. Still others compare to how much the pain bothers them rather than how intense it is.
These internal anchors can change over time. An individual living with chronic back pain, for example, may rate what once felt like an eight as a five after months of adaptation. Another patient may give higher numbers not because the pain has intensified, but because their fear, frustration, or fatigue has increased.
These shifts are not errors. They are the natural variability of subjective reporting.
Recalling Pain and Judging Change Is Even More Challenging
If it is difficult for patients to quantify their pain in a single moment, it is even harder for them to compare today’s pain with what they felt yesterday or last week. Human memory does not store pain like a data file. It stores impressions, peaks, low points, and emotionally salient moments. A patient who had one terrible night may recall the whole week as worse than it was. Another may forget intermittent spikes because their focus is on today’s relative improvement.
When clinicians ask, “Has your pain improved since last week?”, the patient must reconstruct a past state, evaluate the present state, and make a comparison across different contexts – all while experiencing the current pain and the emotional tone that accompanies it. Research consistently shows that retrospective pain ratings only loosely match real-time daily scores.
Patients are not being inaccurate. The cognitive task itself is extraordinarily complex.
Why These Challenges Are Magnified in Hospice Care
In hospice, pain assessment becomes even more nuanced. Patients are often fatigued, medicated, cognitively altered, emotionally overwhelmed, or actively declining. Their ability to articulate subtle sensations may vary dramatically over short periods.
Pain in the hospice setting frequently coexists with breathlessness, nausea, anxiety, existential distress, and profound fatigue. These experiences are tightly woven together and any of them can alter how a patient interprets or expresses pain. As disease progresses, internal reference points change rapidly. What was once severe may later be regarded as tolerable — simply because other symptoms overshadow it.
Medication effects, such as opioids, benzodiazepines, anticholinergics, and sedatives, further alter perception, recall, and communication. Some patients underreport pain to avoid burdening loved ones. Others overreport because they fear future suffering or equate higher numbers with better symptom control. Patients may also rate their distress rather than the level of pain that they are feeling, especially when fear or loss of control is prominent.
All of this makes pain scoring in hospice not just a clinical task but a relational, emotional, and existential interaction.
Why Pain Scores Should Be Interpreted, Not Obeyed
Numerical scores should guide assessment, not dictate conclusions. Overinterpreting a single pain number can lead to unintended consequences: unnecessary dose changes, under-treatment if a patient minimizes pain, over-treatment if a patient overstates pain to express fear, or miscommunication across the care team.
A pain score of six in a relaxed, comfortable, interactive patient is meaningfully different from a six in a patient who is withdrawn, grimacing, or unable to rest. Numbers alone cannot capture that nuance.
Pain scores are most useful when viewed as starting points. Pain scores can act as prompts for deeper questioning, careful observation, and thoughtful interpretation.
Approaching Pain Assessment More Effectively
A more nuanced, clinically grounded approach benefits all patients and is especially vital in hospice. Acknowledging the difficulty of pain scoring helps patients feel understood and reduces the pressure to “get the number right.” Encouraging narrative descriptions often yields richer information than numerical ratings alone. Observing behavior, affect, respiratory patterns, posture, facial expression, and level of engagement provides essential context. These may be the primary source of information in patients who can no longer express themselves clearly.
In hospice care, family members frequently notice subtle signs of discomfort or relief that clinicians might not witness. Their insights can offer valuable directional information about how pain or distress may be evolving. When combined with trends over time rather than isolated data points, these observations support more confident and compassionate decision-making.
Function also remains important, even near the end of life. The ability to rest comfortably, participate in brief conversations, tolerate gentle repositioning, or enjoy small meaningful interactions can be as important, or more important, than reducing a pain score by a point or two.
The Heart of Effective Pain Assessment
Patients are not unreliable historians. They are human beings engaged in a fundamentally subjective and cognitively complex task. Measuring pain – and especially measuring changes in pain – requires layers of interpretation that the human brain is not designed to perform with precision. This reality does not make pain scores useless; it simply means they must be interpreted with humility, contextual awareness, and clinical judgment.
Across all settings, but particularly in hospice, pain ratings should serve as one piece of a broader, richer assessment that includes narrative, function, observation, family insight, and the clinician’s own compassionate perception.
When we recognize the complexity behind every pain rating, we improve the accuracy of our assessments and the quality of our decisions. More importantly, we enhance our capacity to provide comfort – the central promise of hospice care and one of the most meaningful goals in all of medicine.
Further Reading
by editor | Nov 27, 2025 | Blog, Care Keys - Social Workers, Keys to Compassionate Care, Resources and Readings
The Emotional Tension of Aging Parents
As parents grow older, many adult children find themselves in a quiet emotional struggle. On one hand, you want to respect your parents’ independence – the routines they enjoy, the home they’ve built their lives around, the sense of control that still matters deeply to them. On the other hand, you can’t help noticing things that feel different now. Maybe the house that used to suit them perfectly is becoming too much to maintain. Maybe the neighborhood sidewalks aren’t well lit, the hills feel steeper, or the services they used to rely on aren’t as close or accessible anymore. You want your parents to be able to retain their routines and desired level of independence, yet you want them to stay safe and supported.
How can you ensure your parents’ safety without imposing upon them decisions they don’t want?
This tension – respecting autonomy while worrying about safety – is one of the most complex parts of loving aging parents.
Respecting Autonomy While Seeing the Realities
What makes this so hard is that aging doesn’t erase identity. Parents don’t stop being the people who raised you, who made choices, solved problems, and shaped their own path. Even when physical changes or mild cognitive shifts appear –
Their voice still matters.
Their wishes still matter.
At the same time, children often see risks their parents may downplay or simply can’t see from the inside. You might notice the slippery front steps, the dim lighting in the hallway, or the fact that driving at night is becoming more stressful for them. And when you love someone, it’s natural to want eliminate risks or challenges that you fear they may face. You want to prevent problems before they happen.
Balancing your parents’ right to choose with your instinct to protect them can feel like standing on a moving bridge – always adjusting, always trying to stay steady.
Start With Conversations, Not Solutions
One of the most helpful shifts is approaching this with curiosity rather than answers. Instead of saying, “You need to do this,” try sharing what you’re noticing and how it makes you feel.
For example:
“I’ve noticed you seem more tired after getting groceries. How is that part of your week feeling for you?”
Or:
“I worry about the walkway being so dark at night. Does it feel safe to you?”
These kinds of conversations invite your parents into the discussion rather than placing them in the position of being “managed.” They encourage honesty, collaboration, and dignity – all things that help keep the relationship aligned instead of adversarial.
Small Supports That Keep Independence Intact
Not every concern requires a major life-changing decision. Often, small, thoughtful adjustments make a big difference while preserving independence. Better lighting. Grab bars in the bathroom. A more open furniture layout. Help with errands. Grocery or medication delivery. Occasional in-home support. Transportation assistance.
These kinds of supports reduce risk without reducing a parent’s sense of control.
And when a bigger change does become necessary – downsizing, moving closer to family, or considering new types of housing – try to approach it as a shared decision. Explore options together. Ask what they’re open to, what worries them, and what would help them feel grounded and respected throughout the transition.
The goal isn’t to hand your parents a plan. It’s to build one with them.
Remember: Parents Remain Parents
Even as roles shift, the core relationship doesn’t flip. Parents are still parents. They still deserve agency, dignity, and the right to choose – even if those choices look different from what you might pick.
Your role becomes one of walking beside them, not walking ahead and dragging them along. Support looks like guidance, conversation, and care – not control.
Finding Balance Together
The balance between independence and safety isn’t a one-time decision. It’s an ongoing, evolving process. Needs change. Circumstances shift. Some days will feel easier than others.
But with empathy, open dialogue, and a commitment to partnership, families can move through aging in a way that honors safety without sacrificing dignity.
If you’re in this stage with your parents, you’re not alone. Many families are navigating the same mix of love, worry, respect, and responsibility.
Reading Material
by editor | Nov 25, 2025 | Blog, Care Keys - Nurses, Care Keys - Social Workers, Clinical Compliance, Compliance and Regulatory - Directors, Keys to Compassionate Care, Patient Care, Resources and Readings
End-of-life decisions are some of the hardest moments any family, clinician, or hospice team will ever face. Even when a patient has had candid conversations with loved ones, the reality of decline can feel different than anything imagined. When there is no advance directive or clear documentation of the patient’s wishes, those decisions become even more complex. Families may disagree, memories of past conversations may not align, and the clinical team is left trying to balance what is medically appropriate with what might honor the patient’s values. The result is often a mix of uncertainty, guilt, and emotional strain for everyone at the bedside.
This is the space where new data tools and artificial intelligence are starting to appear. Some models claim they can estimate what treatments a patient might choose at the end of life based on patterns in large data sets. Others aim to predict who is at higher risk of dying within a certain time frame, nudging clinicians to start goals-of-care conversations sooner or to consider hospice or palliative care earlier. For hospice and healthcare teams already stretched thin, it can be tempting to see these tools as a way to “solve” the hardest part of care: figuring out what to do when nothing is simple and time is short.
But there is a crucial distinction to hold onto: data and AI can support decision-making; they should not be the decision-maker. An algorithm might highlight that a patient shares characteristics with others who tended to decline aggressive interventions. It might flag that prognosis is shorter than it appears at first glance.
Yet it cannot sit with the family in their grief, it cannot understand a patient’s faith in the way a chaplain can, and it cannot weigh the quiet promises made at a kitchen table months or years before the illness progressed.
At best, AI can offer additional information, patterns, or prompts that help humans ask better questions. It cannot take away the responsibility – or the privilege – of truly listening to what matters most to the patient.
Ethical Challenges
This is where the ethical challenges begin to surface. If an AI model suggests that a patient “would not want” a particular treatment, how much weight should that suggestion carry, especially when there is no formal advance directive? If a clinician disagrees with the model’s output based on what they have heard from the patient or family, whose judgment should guide the plan of care? And if families hear that “the data says” their loved one would choose a certain path, will they feel free to disagree? Or, will they feel pressured by the perceived neutrality and authority of the algorithm? The more powerful and precise these tools appear, the more they risk subtly shifting who feels entitled to make the final call.
For clinical staff, the questions become deeply personal and practical. How will you integrate AI-generated risk scores or preference predictions into your bedside conversations without letting them overshadow your clinical intuition and your understanding of the patient’s story? When a model’s suggestion conflicts with what a patient or family is clearly expressing now, what will guide your next step? How might your moral distress change if a decision later comes into question and someone asks, “Why didn’t you follow what the algorithm recommended?” or, conversely, “Why did you rely on it so heavily?”
For administrators, AI at the end of life raises strategic and cultural questions. If your organization adopts tools that predict mortality or likely treatment preferences, how will that change workflows, staffing, and expectations around hospice and palliative care referrals? Will there be pressure – subtle or explicit – to align care patterns with what the data suggests, especially if payers or partner organizations see AI as a way to manage cost and utilization? How will you communicate to your teams, and to your community, that these tools are meant to inform compassionate care rather than to standardize deeply human decisions?
And for compliance and ethics leaders, AI adds new layers of risk and responsibility. If an AI recommendation influences an end-of-life decision, how should that be documented? What happens if patterns emerge showing that the tool performs differently across racial, cultural, or language groups? Who owns the responsibility to investigate and respond? Is there a point at which the use of AI in end-of-life decision-making should trigger explicit disclosure or consent from patients and families? And if your organization chooses not to use these tools while others do, could that one day be seen as a gap in standard of care – or as a principled stance on preserving human judgment?
End-of-Life Decisions Live in a Crowded Space
None of these questions have easy answers, and perhaps they shouldn’t. End-of-life decisions have always lived in a space where medicine, ethics, family, and faith meet. AI does not change that; it just adds a new voice into an already crowded room. The challenge for hospice and healthcare teams may not be whether to use these tools at all, but how to use them in a way that keeps the center of gravity firmly with the patient and those who know them best.
As AI continues to move closer to the bedside, each organization – and each role within it – will have to keep asking:
- What do we want AI to do in end-of-life care, and what do we want to reserve for humans alone?
- How will we notice if the technology meant to support us is quietly shaping decisions more than we realize?
- And in the moments when nothing is clear and there is no advance directive to guide us, whose voice should carry the most weight: the algorithm’s, the family’s, the clinician’s, or the patient’s story as we have come to know it?
Hospice and palliative care have always been about making room for the hard questions. AI doesn’t take those questions away – it may simply give us new ones to live with.
Reading Material
by editor | Nov 25, 2025 | Blog, Care Keys - Aides, Care Keys - Chaplains, Care Keys - Nurses, Care Keys - Social Workers, Keys to Compassionate Care, Patient Care, Resources and Readings
The multiple facets of healthcare
In most conversations about healthcare, we talk about the clinical side first.
Did the doctor order the right tests?
Was the surgery successful?
What did the scan show?
Those questions matter, of course. But if you’ve ever been the patient in the bed – or the family member sitting in the hard chair next to it – you know there’s another part of care that rarely gets named: the simple act of having someone sit with you, listen to you, and help you make sense of what’s happening.
That quiet, human part of medicine is often treated as “extra.” It isn’t. For many patients and families, it’s the only part they actually remember.
We train for procedures, not for presence
From the very beginning, most healthcare education is built around clinical competence: anatomy, pharmacology, lab values, imaging, guidelines, algorithms. Students are graded on what they can do and what they can recite.
What usually isn’t graded – and often isn’t explicitly taught – is how to sit at the edge of the bed when there’s nothing left to fix or how to stay in the room when someone starts to cry. No one runs an exam on how well you handle that long silence after you say, “I’m so sorry, this isn’t the news we were hoping for.”
Those skills are treated as personality traits or “nice extras,” instead of as essential tools. Yet they are every bit as important as knowing which medication to prescribe.
The information gap no one talks about
On top of this, there’s another major blind spot: information asymmetry.
Clinicians live in medical language all day long. “Metastatic,” “ischemic,” “palliative,” “multi-organ failure,” “guarded prognosis” – these phrases roll off the tongue without a second thought. To a scared family member who hasn’t slept in two days, they might as well be another language.
Now layer in the emotional context. When someone you love is suddenly very sick, your brain goes into survival mode. You are exhausted, anxious, sometimes in shock. You’re trying to hold it together, call relatives, update your boss, sign forms, and somewhere in there, a doctor appears and “explains” what is happening.
From the clinician’s perspective, they’ve done their job. They’ve “served” the family the information: diagnosis, treatment options, risks, benefits, prognosis. They may even feel they’ve been incredibly clear.
From the family’s perspective, it can feel like being hit by a wave. The words come, you nod along, you maybe ask one question and then later you realize you have no idea what was actually said. You don’t know what to expect tonight, or tomorrow, or next week. You don’t know what to tell your kids. You don’t know what “nothing more we can do” really means.
It’s not that the family is unwilling to listen or “non-compliant.”
It’s that they are overwhelmed.
Sometimes they literally do not understand the terminology. Other times the anxiety is so high that their brain can’t properly process or store the information. Cognitive bandwidth shrinks in a crisis. No amount of extra talking fixes that on its own.
“We already told them” is not enough
If you spend time on a hospital ward, you’ll occasionally hear a frustrated comment like, “We already explained this to them,” or, “We had a long family meeting yesterday – they just don’t get it.”
That frustration is human, but it misses the point.
Explaining once, under fluorescent lights, with alarms going off and fear hanging in the air, is rarely enough. Families need time, repetition, and a chance to ask the same question three different ways without being made to feel stupid or difficult.
They also need someone who can bridge the emotional and informational gap at the same time:
“Yes, I know this is a lot. Let’s go through it slowly. Here’s what we know right now. Here’s what we don’t know. Here’s what the next 24 hours will probably look like.”
You don’t need a prescription pad for that conversation. You need patience, empathy, and the willingness to stay present while someone’s world is tilting.
Presence as real, tangible care
It’s easy to dismiss “sitting with someone” as soft or secondary. But think about what presence actually does:
- It reduces isolation. A patient facing a frightening diagnosis or the end of life often feels profoundly alone, even in a busy hospital. Having another person nearby, especially someone who isn’t rushing in and out, changes that.
- It helps people process. When a volunteer, chaplain, nurse, or physician takes the time to go over information again, answer questions, or simply listen, patients and families can finally start to make sense of what they’ve been told.
- It validates emotions. Fear, anger, grief, numbness – these reactions are normal in a crisis. When someone says, “Of course you’re overwhelmed; anyone would be,” it gives people permission to feel what they’re feeling instead of wasting energy trying to hide it.
None of this shows up on a lab report. But it absolutely affects how people experience their illness, how they cope afterward, and sometimes even how well they stick to a treatment plan.
What we don’t teach – but should
Most clinicians pick up these skills informally, by watching role models or making mistakes and learning from them. Very few are given structured practice in:
- Sitting in silence without rushing to “fix” it
- Delivering serious news in plain language and then actually checking what was understood
- Recognizing when a patient or family is too anxious or exhausted to absorb more, and pausing instead of pushing on
- Partnering with chaplains, social workers, and volunteers to make sure no one is left to face the hardest moments alone
These aren’t just “nice qualities” for naturally empathetic people. They are learnable skills that can and should be a formal part of training – in medicine, nursing, social work, and other health professions.
Programs where students sit with hospice patients, accompany families, or spend time in palliative care and chaplaincy settings can be powerful training grounds. They teach, in a very concrete way, that care is not only about interventions. It is also about witness, presence, and kindness in the middle of uncertainty.
Bringing the human side back into the center
None of this is an argument against clinical excellence. People need accurate diagnoses, evidence-based treatments, and competent procedures. Lives depend on that.
The point is that clinical care and human presence are not in competition. They are two halves of the same promise: we will do what we can for your body, and we will not abandon you – or your family – emotionally while we do it.
For patients and families in crisis, the memory that stays is often not the name of the medication or the details of the scan. It’s the doctor who pulled up a chair instead of standing in the doorway. The nurse who came back after the family meeting and said, “What questions are popping up now that everyone has left?” The volunteer or chaplain who stayed into the night so a loved one didn’t die alone.
As we think about how to improve healthcare, we can’t stop at better technology or more efficient systems. We have to also ask:
- Are we making space for presence?
- Are we teaching future clinicians how to communicate with people who are scared and confused, not just with people who are calm and well?
- Are we valuing the emotional and spiritual labor that chaplains, nurses, social workers, and volunteers do every day at the bedside?
Because for many patients and families, the most healing part of their experience is not what was done to them, but who was willing to sit with them.
Additional reading material
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.
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