Category: Reflection

Stories, emotional meditations, and personal perspectives. These are often narrative, philosophical, or soulful.
Examples: Hope You Get Hospice Too, Sitting at the Edge, The Day We Cried in IDG

  • NYHA in Hospice: Turning Breathlessness into Shared Language

    NYHA in Hospice: Turning Breathlessness into Shared Language

    The NYHA Still Matters

    Every hospice nurse knows the moment: the patient gasps two steps after standing, already on oxygen, swollen despite diuretics, worsening each week. Families call it weakness. Hospitals call it criteria. We should name it New York Heart Scale (NYHA) Class IV with clinical clarity.

    “NYHA Class IV” alone in the chart invites denials, audits, and mistrust. It was never a checkbox. Paired with PPS ≤40% and functional decline, it tells a tale. Without context, it erases that story and costs patients’ care. Much like other metrics that matter, NYHA remains essential in hospice: not a number, but a narrative of breath and function. It’s all about the score plus the story.

    Case Example

    Mr. Lowe, 78, a retired truck driver, had severe heart failure. His EF sat near 30%. His daughter asked, “Does that number mean he qualifies for hospice?”

    What mattered wasn’t just a static EF. He became short of breath just pulling on his socks. He had two hospitalizations in 60 days. He had 10lbs of fluid gain, despite diuretics.

    EF didn’t tell that story. However, NYHA classified it as Class IV, with symptoms present at rest. Paired with PPS 40% and documented declines. The record was clear, defensible, and compassionate. His daughter finally understood: “his heart can’t get him through the day anymore.” She was right, it’s not just about numbers. 

    The Essentials

    Definition. NYHA is a four-class system quantifying functional limits in heart failure:

    • Class I: No symptoms with ordinary activity
    • Class II: Symptoms with ordinary activity
    • Class III: Symptoms with less-than-ordinary activity
    • Class IV: Symptoms at rest

    Nature. NYHA is subjective. It depends on clinician judgment, patient report, and observed capacity. It predicts mortality, but reproducibility suffers from interobserver variability.

    Theme. NYHA is essential but insufficient. Alone it misleads. In context it clarifies.

    Application. “Symptoms at rest” is the textbook line, but Class IV is broader:

    • Minimal effort counts. Even standing, dressing, or talking may trigger symptoms.
    • Not just dyspnea. Fatigue, palpitations, and angina also qualify.
    • Fluid symptoms count. Orthopnea, paroxysmal nocturnal dyspnea, bendopenia.
    • Dynamic status. Patients may fluctuate between III and IV; document the worst functional state.
    • Prognosis. Class IV signals poor survival, but hospice eligibility still requires PPS ≤40%, weight loss, or hospitalizations.

    At the bedside, Class IV means:

    • “Patient breathless pulling on socks.”
    • “Requires chair after 10–15 feet.”
    • “Needs 2–3 pillows to sleep.”

    NYHA IV should always be written as lived narrative, not just noted simply as “at rest.”

    History

    NYHA classification first appeared in 1928, refined in 1964 and 1994. Why has it lasted nearly a century? Not for perfection. It is subjective and inconsistent. It lasted because it is simple, human, and functional.

    Before PPS or ECOG, cardiology needed a way to say what patients could do and what they could not. NYHA gave that answer. Hospice inherits the same need: a language of limitation understood in the clinic, in the living room, and in audits.

    Clinical Relevance

    In advanced heart failure, NYHA still provides clarity:

    • Class IV signals serious limitation, usually with PPS <50%.
    • CMS LCDs cite NYHA IV plus decline markers: hospitalizations, EF <20%, weight loss.
    • Ejection Fraction (EF) is often a lagging indicator. Echo numbers may look stable or go unmeasured while patients continue to decline. Functional change over time always carries more prognostic weight.
    • Families and physicians outside hospice know the scale, making it a bridge between worlds.
    • Scope: Validated in HF and valvular disease, sometimes in congenital or right-sided failure. For non-cardiac illness, use tools like PPS or FAST.

    Used wisely, NYHA supports eligibility, teaches teams, and reassures families that what they see is real.

    Interdisciplinary Voice

    What each discipline brings to NYHA:

    • Nurse: Record distance and recovery. “Needs two rests in 15 feet.”
    • Social Worker: Capture role loss. “Stopped grocery shopping due to breathlessness.”
    • Chaplain: Note spiritual or community loss. “Unable to attend church after 50 years.”
    • Physician/NP/PA: Synthesize. “NYHA IV, PPS 40%, 5% weight loss, two CHF admissions, decline consistent with terminal heart failure.”

    In IDG, NYHA language should not sit only in the physician’s note. When nurses, social workers, and chaplains mention the same functional language: dyspneic at rest, limited to 10 feet. Then whole record speaks with one voice.

    Number + Narrative

    NYHA should always be Number + Narrative.

    • Number: Class I–IV
    • Narrative: Functional loss proving the class

    Examples:

    • “NYHA IV, dyspneic at rest, PPS 40%, two CHF admissions, 5% weight loss in 3 months.”
    • “Paused twice in 10 feet, needed chair after 20 seconds standing.”

    Pair with PPS and weight trends to strengthen eligibility notes. Never rely on EF alone. Function carries more prognostic weight.

    Beyond Self-Report: Anchors That Hold

    NYHA is subjective. Frail or cognitively impaired patients may understate symptoms or forget limits. To anchor classification:

    • Use proxy reports from caregivers.
    • Document observed tasks: “Paused twice in 10 feet, needed chair after 20 seconds standing.”
    • Add objective tools: PPS, FAST, etc…

    Anchors improve reproducibility and strengthen eligibility notes.

    Blind Spots and Misuse

    • Equating EF with prognosis: Low EF alone does not qualify. Function drives prognosis.
    • Confusing PPS with NYHA: PPS is global; NYHA is disease-specific. They complement, not replace, each other.
    • Assuming Class IV is enough: Documentation must show decline over time.
    • Over-jargon in charting: “NYHA IV” without narrative is not defensible.

    Compliance pitfall: A chart that only says “NYHA IV” is not very helpful. In audits, NYHA without narrative is treated as noncompliant. Eligibility rests on narrative: distance, frequency, functional loss. Without it, coverage and credibility collapse.

    Say This / Not That

    Say ThisNot That

    “NYHA IV, dyspneic at rest; PPS 40%; unable to walk 10 feet; two hospitalizations this year.”
    		“NYHA IV.”

    “EF 25% with functional collapse, symptoms now daily at rest.”

    “Low EF, so hospice.”

    “Decline in activity and self-care, no longer dresses without stopping for breath.”
    		“PPS 40%, meets criteria.”

    “Observed dyspnea after 8–10 feet, accessory muscle use, needed chair after 20 seconds, PPS 30%.”
    		“Nonverbal patient, severe CHF.”

    Closing

    NYHA is essential but insufficient. Alone it risks becoming a checkbox that hides truth. Paired with PPS, weight loss, and hospitalizations, it tells a story of decline families and auditors can trust.

    Like PPS and FAST, NYHA follows our Hospice Synopsis rule: every metric must live through story. The number points. The story proves.

    When decline is measured, NYHA gives us the language. Our job is to add the narrative that makes hospice clear today.

    3 Key Insights

    • NYHA remains one of the oldest and clearest functional tools in heart failure, still vital in hospice.
    • It is subjective. Anchor it with PPS, weight loss, and observed decline.
    • A number alone fails. Narrative makes eligibility defensible and care plans clear.

    2 Actionable Ideas

    • Standardize CHF notes: always pair NYHA with PPS and recent hospitalizations.
    • Teach every IDG member how their notes shape NYHA class.

    1 Compassionate Call to Action

    Use NYHA not as a checkbox but as a bridge. Turn breathlessness into language that families, teams, and auditors can trust.

    “Breathless at ten feet tells a truer story than EF alone. NYHA gives us the words; PPS and trajectory make them matter.”

    Bibliography

    • The Criteria Committee of the New York Heart Association. (1994). Nomenclature and Criteria for Diagnosis of Diseases of the Heart and Great Vessels (9th ed.). Little, Brown & Co.
    • Centers for Medicare & Medicaid Services. (2025). Local Coverage Determination (LCD): Hospice – Heart Disease. https://www.cms.gov/medicare-coverage-database
    • Levy, W. C., Mozaffarian, D., Linker, D. T., et al. (2006). The Seattle Heart Failure Model: Prediction of survival in heart failure. Circulation, 113(11), 1424–1433. https://doi.org/10.1161/CIRCULATIONAHA.105.584102
    • O’Connor, C. M., & Whellan, D. J. (2005). Evolving role of functional classification in heart failure: NYHA and beyond. American Heart Journal, 149(2), 209–214. https://doi.org/10.1016/j.ahj.2004.03.010

    Glossary Terms

    • NYHA (new): The New York Heart Association classification—a four-stage functional system (I–IV) originally designed for heart failure, still used in hospice to document decline and support eligibility.
    • Class IV Heart Failure (new): The most severe NYHA stage, defined by symptoms at rest. In hospice, often paired with PPS <50% and recurrent hospitalizations to support eligibility.

  • Racing to a Good Day

    Racing to a Good Day

    How Hospice Teams Drive Meaningful Moments at the End of Life

    Introduction

    Pancho just wanted one last lap around the track.

    His heart was failing. I worried about the risks, the meaning, the safety, the weight of the request. At IDG we planned a way forward: a car show and a vehicle that could give rides to anyone able.

    We brought a racing UTV to the nursing home. A lightweight off-road vehicle, open-sided with roll bars, easy to enter and safe at low speed. Residents gathered outside, smiling as the engine rumbled. We ran slow laps in the cleared parking lot.

    He came outside, placed a hand on the hood, and whispered: “Fun.” That single word became the memory staff return to again and again. The ride wasn’t only his wish. It became a shared joy for the whole facility.

    Hospice often begins with one simple question: “What would make today a good day?” The question anchors dignity therapy, which helps patients reflect on meaning and legacy (Chochinov, 2007), and aligns with person-centered outcomes research, which emphasizes tailoring care to individual values.

    The answer might be woodworking or card night. Often, it’s simply not being alone. Sometimes, it’s the thrill of the racetrack.

    When hospice is done well, “a good day” is not chance. It’s created by a team, an IDG, working together to make meaning possible. That’s what we were racing toward when Pancho touched the hood and whispered his truth.

    The Power of the Team: Who Shows Up, and Why It Matters

    In hospice, care is never the work of one. It belongs to the interdisciplinary group (IDG). Each brings a distinct lens. Together, they steer the day toward peace.

    When it works, it sounds like:

    • A chaplain singing hymns bedside because the patient once led worship
    • A social worker securing additional aide coverage from a payor
    • A massage therapist easing agitation so meds aren’t needed as often
    • A nurse finding a way to get a patient to her daughter’s backyard wedding
    • A PA signing off and attending a boating trip for a patient with special needs

    These moments rarely appear in the chart, but they shape what families remember as the why in “why hospice, why now”.

    Moments That Made the Day: True Stories of Wishes Come True

    • The Home Prom: A young woman with Huntington’s disease never got to go to prom. So her ECF team helped her pick a dress. Family decorated the commons. Staff showed up in suits. She danced the night away.
    • The Final Adventure: A patient with two young children shared one wish: to create joyful memories at the zoo. The social worker and volunteer coordinator made it happen with help from our hospice foundation. A dolphin encounter and dinner. A weekend full of laughter.
    • The Almost Missed Moment: We nearly missed a patient’s final porch visit because the DME vendor canceled last minute. The aide called three suppliers. The social worker drove 40 minutes to secure backup equipment. By nightfall, the patient sat under the stars with his brother. No chart could capture what that moment of mobility and freedom meant to the family. 

    These weren’t mapped routes. They were turns we took because someone asked, ‘Can we?’—and the team found a way. These moments answered the question: What would bring peace today?

    These moments remind us that presence is the foundation of care, even when wishes can’t be fully realized. The National Hospice and Palliative Care Organization (NHPCO) offers resources to help teams navigate such challenges (nhpco.org).

    The Good Day Loop: A Practice Worth Repeating

    Good days don’t happen by accident. They happen when teams stay curious, responsive, and reflective. The Good Day Loop offers a rhythm for everyday care:

    1. Ask  — What would make today a good day?
    2. Act — Try one thing, big or small.
    3. Reflect — What worked? What was missed?
    4. Care Plan — Document it. Build on it.
    5. Share — Who made it possible? What did it teach?

    Quarterly Prompt for IDGs: Pick one good day story each quarter. Review it as a team. Teach it to new staff. Share it in a Legacy Round to build culture from lived examples.

    Example: A nurse documented that a patient wanted to sit outside. The next week, the chaplain arranged music in the garden. What began as a line in the chart became a shared act of care.

    Each Role, One Voice

    Like driver and pit crew, each move depends on trust, timing, and a shared direction.

    Closing Reflection: We Don’t Just Witness Good Days. We Build Them.

    Hospice doesn’t always mean a ride around the track. Sometimes it’s motion brought to stillness. Sometimes it’s joy in a parking lot. Sometimes it’s presence when the plan falls apart.

    Ask the question. Let the answers guide care. Some answers lead to joy. Some to stillness. Some to nothing at all. But asking still matters. Showing up still matters.

    As Blog #1 reminded us: Think with the End in Mind. As the BigR reframes: focus on the high-leverage moments that build legacy. Good days in hospice are not accidents. They are the legacy of an IDG that asks, acts, and adapts together.

    Three Key Insights

    • The question “What would make today a good day?” is a compass for meaningful care.
    • IDG members bring unique and essential tools to make moments matter.
    • Hospice’s greatest impact is often in the non-medical moments it protects and makes possible.

    Two Actionable Ideas

    • Hold quarterly Legacy Rounds where each team member brings one story, one moment, or one line from a patient that brought meaning.
    • Add a “Good Day” section to routine IDG documentation: what mattered, what was tried, what was noticed. Remember: You are not just documenting decline. You are helping someone live. Ask the question. Make the moment. Share the story.

    One Quote

    “In hospice, good days don’t happen by chance. They’re driven by presence, steered by trust, and tuned by teamwork.” — Brian H. Black, D.O.

    Bibliography

    • Chochinov, H. M. (2007). Dignity and the essence of medicine: the A, B, C, and D of dignity-conserving care. BMJ, 335(7612), 184–187. https://doi.org/10.1136/bmj.39244.650926.47
    • National Hospice and Palliative Care Organization. (2024). Standards of Practice for Hospice Programs. Retrieved from https://www.nhpco.org

    Glossary

    Dignity Therapy – A structured interview method that helps patients reflect on meaning, purpose, and legacy at the end of life.

    Person-Centered Outcomes – Research and practices that measure success by how well care aligns with the individual patient’s values, not just clinical metrics.

    Good Day Loop – A repeatable hospice practice framework of asking, acting, reflecting, documenting, and sharing patient-centered goals to create meaningful days.

    Today Was a Good Day – A Hospice Synopsis phrase highlighting that small, values-driven interventions can define the impact of hospice care.

    IDG Storyboard – A practice tool for capturing, teaching, and passing on good-day stories within the interdisciplinary group to shape culture and morale.

    To Do: Future Project

    The Good Day Tracker – A companion tool for IDGs to record, reflect, and share “good day” moments. Includes:

    • Printable template for quotes, wishes, follow-through notes
    • Weekly prompts for IDG morale and inspiration
    • Integration into onboarding and staff storytelling efforts

  • The Shape of Dying: The Four Illness Trajectories

    The Shape of Dying: The Four Illness Trajectories

    The Shape of Dying: The Four Illness Trajectories

    Written by

    Brian H. Black D.O.

    in

    , ,

    The Shape of Dying

    By noon, she was unconscious. But earlier that morning, her mother had eaten three good bites of oatmeal. Every similar quiet breakfast prior had felt like proof she would recover—until that day. The daughter remarked to us, “No one said it could go this fast.” 

    To relieve suffering, we need to know a little about future. “We can’t predict an exact date of death, but we can trace its path and prepare for what’s likely.”

    Doctors often overestimate how long patients will live—sometimes by a factor of five ( Christakis & Lamont, 2000). This can delay hospice signup and leave families unprepared. We speak of “unexpected deaths” in people who are seriously ill, even on hospice. Paradoxically those professionals who know the patient the best are often the worst at prognostication. 

    Knowledge of basic illness trajectories—Sudden Death, Terminal Illness, Organ Failure, and Frailty—helps you plan. These patterns, described by first in the early 2000s, are maps of future decline.

    “Death never arrives unannounced. It simply finds us unprepared.” — adapted from Seneca.

    That’s why we ask: “Is this patient likely to live six months or less?” The answer informs hospice eligibility. Another question is the Surprise question: “Would you be ‘shocked’ if this patient were still alive in 12 months?” This framework from UK’s Gold Standards prompts planning over prediction. Use these two questions to think about eligibility broadly. Then consider disease trajectory and how if might advance. 

    “Trajectory recognition is how we move from hospice eligibility to hospice strategy. It transforms IDG from reactive to prepared.” — Brian H. Black, D.O.

    The Four Common Trajectories of Decline

    Each broad category of slope carries its own pace and preparation. Imagine four lines on a graph—one drops like a cliff, one plunges after a long plateau, one dips and rises in jagged waves, and one slopes so gently at times you almost miss it.

    Visual Reference: The Four Trajectories of Functional Decline

    Source: Lunney JR, Lynn J, Hogan C. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–92.

    This model helps you recognize patterns early. Published in JAMA in 2003, it not only introduced this now-familiar above visual but confirmed clinical relevance with more than 4,000 patients. The study remains a grounded source for hospice trajectory education. 

    TrajectoryConditionWhat to ExpectHow to Prepare
    Sudden DeathStroke, Heart AttackAbrupt end, no warningDiscuss Advance Directive Early
    Terminal IllnessCancer, ALSSteady, then fast declineEducate on Symptom Mgt.
    Organ FailureHeart Failure, COPDUps and downs, less recoveryPrepare Comfort Kits at Admit
    Frailty/DementiaDementia, AgingSlow decline, sudden dropsReassess after minor event
    1. Sudden Death – High function until abrupt end; often precedes hospice referral.
    2. Terminal Illness – Stable function with steep decline.
    3. Organ Failure – Repeated crises, incomplete recoveries.
    4. Frailty/Dementia – Long, slow decline until a minor event causes collapse.

    Prognostication: A Skill Worth Pursuing

    Why Prognostication Matters

    Families don’t need certainty. They need orientation.

    Tools for Better Forecasting

    A 2014 study by Paiva and Bruera showed that function and symptom burden predict better than diagnosis alone. The Palliative Performance Scale (PPS), which measures a patient’s ability to perform daily activities, reveals what lab tests can’t always show. While symptom burden, tracked over time, reveals the shape of decline. 


    Naming the trajectory aligns care with reality. It informs—not replaces—clinical judgment.e. What begins as a misunderstanding often ends as mistrust, just when families are looking for someone to help carry the weight.

    The Interdisciplinary Group’s (IDG) Role in Trajectory Recognition

    When the Team Misses the Pattern

    When the Interdisciplinary Group (IDG), the team of nurses, social workers, aides, and chaplains, fails to name the trajectory:

    • The nurse under-forecasts decline.
    • The social worker misses anticipatory grief cues.
    • The aide’s instincts are ignored.
    • The chaplain senses withdrawal but can’t explain it.
    • The family is unprepared.

    Common Pitfalls

    • Over reliance on labs
    • Making inferences with limited information
    • Hesitating to name a trajectory due to fear of being wrong, thereby delaying preparation. 
    • Underestimating the observations of experienced staff

    When the Team Names It Clearly

    • Expectations align.
    • Medications make contextual sense.

    The team plans for what’s coming—not just what is.
    A seasoned social worker said: “When families think they have months and we know it’s days, their grief gets ambushed.”
    No single discipline owns trajectory recognition. It’s a shared clinical mosaic, and as a new physician, you’ll rely on your IDG to refine this skill.

    Turning Recognition into Action

    How to act on a trajectory as a new hospice physician:

    • Document it: “Organ failure trajectory, likely more and worse heart failure flare-ups.”
    • Say aloud: “This pattern may repeat—with poorer recovery.”
      Example: You notice a COPD patient’s recent hospitalization signals an Organ Failure trajectory. Document this in the chart and propose a comfort kit at the next IDG to prepare for worsening crises.
      This informs your team and the family, building confidence in your clinical decisions.

    First Steps checklist: 

    • Assess present and historical function with patient, family, and via the clinical records.
    • Ask IDG about recent trajectory shifts during reviews.
    • Practice the family forecast script in team discussions 
    • Care Plan and frequently reassess

    Mapping Trajectories: From Pattern to Practice

    Note: Some patients shift trajectories after new injuries, infections, or weight loss. For example, a COPD patient may follow a frailty-like course after an aspiration event. IDGs should re-map trajectories after major clinical changes.

    Steps for Teams

    Tip for IDG Chairs: Use a 2-minute teach-in to normalize trajectory talk. “Let’s name the likely trajectory—then check if our care plan matches it.”

    Caution: Trajectory slope doesn’t dictate visit frequency, but steeper declines may require rapid plan revisions or urgent physician follow-up.

    1. During IDG Review
      • Identify the primary trajectory.
      • Note changes in slope, crises, or recoveries.
    2. As a Documentation Anchor
      • In notes or visits: “Continues on a frailty trajectory with PPS of 40%, minimal reserves. Now a 2-person assist to chair in the last 2 weeks.”

    Steps for Families

    1. Teach the Pattern
      • Example: “Here’s the pattern we often see in dementia.”
      • Two-Week Forecast: “She seems steady, but these small changes are expected to continue without improvement.”
    2. Sample Family Forecast
      • Explain: “Your loved one may have good and bad days.”
      • Prepare: “Over time, bad days may increase, and recovery may be harder.”
      • Reassure: “We’ll stay close and offer help for shortness of breath, like a comfort kit, if needed.”
    3. Respect Family Beliefs
      • Ask: “How do you talk about serious illness in your family?”
      • Adjust: “We’re planning for comfort as her body slows.” to respect cultural norms.

    Closing Reflection

    Patients do not decline in straight lines. But when you recognize the shape of likely decline, you can ready the road ahead. You can’t stop what’s coming, but you can guide patients and families through it.


    As a new hospice physician, you don’t predict death’s arrival—you name the shape it takes and give guidance. That’s your work now, and your IDG team will help you refine it.

    Three Key Insights

    • “Unexpected” hospice deaths often reflect system failures, not clinical error.
    • Recognizing trajectory patterns helps you plan, forecast, and communicate effectively.
    • Preparation reshapes grief: when families know what’s possible, they suffer less shock.

    Two Actionable Ideas

    • Use the Two-Minute Forecast in IDG to normalize unpredictability and reduce panic.
    • Name each patient’s illness trajectory in IDG to guide visit strategy and family education.

    One Compassionate Call to Action

    Don’t wait for surprise. Speak clearly. Speak early. Speak often. Trajectory recognition equips you and steadies families. Lean on your IDG’s seasoned nurses or social workers to refine your skills.


    Share your story: Do you have tips for understanding illness trajectories as a new physician? Comment below or tag us on Instagram and Facebook (@HospiceSynopsis) to join the conversation.

    Contact us: Discuss trajectory challenges and we can grow our skills together.

    Glossary Terms

    Trajectory of Decline: A pattern of decline commonly seen in patients with terminal illness. Hospice care uses four primary trajectories: Sudden Death, Terminal Illness, Organ Failure, and Frailty. Recognizing a patient’s trajectory guides clinical decisions, caregiver education, and resource planning.

    Trajectory Mapping: The deliberate process of identifying and documenting the expected pattern of decline in a hospice patient, based on clinical observations and disease course. Used in IDG, charting, and caregiver teaching. Useful for Forecast Scripting.

    Surprise Question: A prognostic tool from the UK’s Gold Standards Framework: “Would you be surprised if this patient were still alive in 12 months?” Used to trigger early palliative planning.

    Six-Month Question: A formal inquiry guiding hospice eligibility: “Is the patient likely to live six months or less?” Requires clinical judgment—not certainty—but frames hospice certification decisions.

    Sparks

    “You can’t predict death’s timing, but naming its shape guides your care. #TrajectoryMatters”

    “Miss the pattern, and grief surprises families. Name it, and your IDG aligns care. #HospiceMedEd”

    “Trajectories are your roadmap to proactive hospice care. Start mapping today. #IDGReady”

    “Don’t chase ‘when.’ Focus on ‘what’ to prepare patients and families. #PrognosisIsCare”

    “How do you use trajectories to orient families? Share your tips! #HospiceTips”

    Bibliography

    Lunney JR, Lynn J, Hogan C. Patterns of functional decline at the end of life. JAMA. 2003;289(18):2387–2392. doi:10.1001/jama.289.18.2387

    Lynn J, Adamson DM. Living Well at the End of Life: Adapting Health Care to Serious Chronic Illness in Old Age. RAND Corporation; 2003

    FAQ: Common Questions Regarding Trajectory

    Q: How do I know which trajectory my patient is on?
    A: Ask in IDG for your teammates to describe the patient’s illness pattern, like stable periods or frequent crises. Use tools like the Palliative Performance Scale or others to clarify function patterns and discuss at IDG meetings.

    Q: What should I ask my IDG to improve my trajectory recognition?
    A: Ask, “What patterns have you seen in similar patients?” and “How can we adjust our care plan for this trajectory?” This leverages team expertise to guide decisions. Then care plan your changes. 

    Q: Can a patient’s trajectory change?
    A: Yes, events like infections or injuries can shift a patient’s trajectory. Reassess and update the care plan with your IDG after major changes.

  • Managing Expectations in Hospice

    Managing Expectations in Hospice

    The Underrated Skill That Impacts Everything

    Written by

    Brian H. Black D.O.

    in

    ,

    When It Doesn’t Seem Like Enough: A Story in Two Voices

    “It was awful,” she said. “I had to give the meds. And no one was there. We were alone.”

    In those final hours, Nicki wasn’t just grieving. She was the caregiver, the one holding the morphine. She felt guilty, afraid to do it wrong, and overwhelmed with her own swirling questions.

    The triage team dispatched a nurse. But for Nicki, in that moment, it wasn’t enough. She had some information, but no clear forecast of what to do if the meds didn’t work. No one had explained that “on call” could mean support was an hour away.

    She wasn’t clinically unsupported, but her grief was compounded by uncertainty.

    On the other side of that same midnight story:

    “I got the page and headed out immediately. Triage said the caregiver was worried, so they gave some tips on dosing existing meds. The GPS said 47 miles to go.”

    Susan, the on-call nurse, dropped everything. She drove at the upper end of the speed limit and arrived promptly. She offered her full presence. But the patient had just died. She felt the brunt of arriving “too late.”

    Sometimes, this is a staffing problem. But much more often, it’s a systems problem. Hospice was designed for intermittent presence—but the public expects immediate on-site availability.

    Especially in rural areas, hospice teams cover wide territories with limited resources. One nurse may manage three counties. That’s the clinical reality. But the caregiver’s memory will often be based on one question: Was someone physically there when it mattered most?

    This situation was a failure in expectation alignment. To avoid this, we need to establish and review clear plans much earlier in the course of care. 

    Expectations Unspoken

    A 2021 study found nearly 50% of caregivers felt hospice didn’t meet their expectations. This is largely because they didn’t know what hospice actually included, how often support would arrive, or what their role was supposed to be. [1]

    I asked in a recent informal LinkedIn poll, “What is the biggest knowledge gap in hospice?” One answer stood out at nearly 50%: managing expectations.

    This insight came from seasoned clinicians, team leads, and front-line hospice staff. They tell me is this: trust doesn’t break from poor care. Trust frays when expectations remain unspoken.

    Families can’t understand what we never clearly said.

    The Gap Between Assumption and Reality

    Every person walks into a hospice consult with different expectations for the journey ahead. Few actually know the terrain they’re about to face.

    Families often think of hospice as a full service rescue mission. Instead, they often receive a simple well-meaning map and a comfort kit—just before a long, unfamiliar hike.

    • Many patients quietly hope they’ll get better soon: “That’s why I have hospice experts.”
    • Clinicians may assume families understand the limits of the benefit—a defined Medicare offering with clear regulatory edges.
    • Families often expect a panacea: constant nursing, instant relief, and full-day presence from admission through aftercare.
    • Referring providers or marketing teams may unintentionally set expectations we simply can’t meet.

    Across the board, assumptions differ. Mismatched expectations can’t all be true. What begins as a misunderstanding often ends as mistrust, just when families are looking for someone to help carry the weight.

    Forecasting Trust: Conversations That Prepare

    Managing expectations isn’t a script. But it should be!

    We call them Two-Minute Forecast Scripts—brief, teachable conversations that help families understand what hospice care truly includes and what to expect next. Delivered near the end of a visit, these Two-Minute Forecast Scripts clarify symptoms to watch for, explain roles, and build trust by previewing expectations until the next visit.

    These clinical tools are vital. When IDG teams train, model, and consistently use these scripts, they see success in real time. These scripts do more than inform. They turn communication into confidence and prepare families for what’s next. 

    This is how we deliver clarity as care.

    Research emphasizes that “Proactive communication that clarifies the scope and limitations of hospice services is critical to mitigating caregiver distress and fostering trust in the care process.” [2]

    “We’ll be here for you” sounds comforting. But families need specific orientation over vague reassurance. Imagine instead:

    “We’ll always be here for you—by phone, with guidance, and for urgent visits when needed. Call us early if the shortness of breath starts again anytime. Here’s how that works with your family regarding the meds for this weekend…”

    This isn’t about simply under-promising or over-delivering. Preparation itself is a form of presence. And the clarity that follows stays long after the visit.

    From Words to Practice

    Here are a few simple ways IDG teams can start today:

    • Reframe vague language (“We’ll be here” → “Here’s how we respond…”). That’s care planning in action, clear guidance with a timeline that families can trust.  
    • Include expectation alignment at every admission—and during any change in condition.
    • Share a simplified written care plan that outlines visit frequency, symptom response, and who does what and when. Review it with the family to ensure understanding.

    When we lead with clarity as care, we equip patients, families, and facilities with the expectations and tools they need – before a mismatch becomes a crisis.

    “Clarity is care. Simple, clear, honest communication is one of the most eloquent forms of clinical intervention.” Brian H. Black D.O.

    3 Key Insights

    Mismatched expectations are one of the leading causes of distress in hospice care.

    • Families don’t need perfection but they need clarity of expectations. It’s how we give care.
    • Managing expectations is a clinical skill. It is one we can teach, support, and systematize.

    Two Actionable Ideas

    • Use forecast scripts and simplified care plans to create clear, shared expectations.
    • Train IDG teams to revisit expectation alignment regularly—not just at admission.

    One Compassionate Call to Action

    Let’s stop assuming families know what hospice means. Try a forecast script of your own. Walk them toward what comes next with compassionate clarity.

    Bibliography

    [1] Kehl, K. A., Kirchhoff, K. T., Kramer, B. J., & Hovland-Scafe, C. (2021). Caregiver perceptions of the quality of hospice care: A prospective cohort study. American Journal of Hospice and Palliative Medicine, 38(3), 258–266. https://doi.org/10.1177/1049909120963600

    [2] Head, B. A., & Faul, A. C. (2013). Development and Validation of a Scale to Measure Satisfaction with End-of-Life Care. Journal of Palliative Medicine, 16(9), 1093–1100. https://www.liebertpub.com/doi/10.1089/jpm.2013.0062