08/08/2026
Hospice Is More Than a Visit
The Difference Between Showing Up and Being Present
By Sheila Clark, President and CEO, CHAPCA
I believe there is no greater privilege than walking alongside patients and families during one of life’s most vulnerable journeys.
Lately, however, I have been hearing a troubling theme from patients, families, and caregivers.
The hospice nurse is making visits. The social worker is checking in. The chaplain has stopped by. The hospice aide is providing personal care.
Every discipline appears to be doing its job.
Yet the patient and family still feel alone.
They do not feel prepared for what is happening. They do not understand the patient’s decline. They do not know what changes to expect, when they should call hospice, or whether someone will come when they need help.
That should concern every hospice leader.
Hospice is not measured by the number of visits we make. It is measured by whether patients and families feel supported, prepared, informed, and cared for throughout the entire journey.
The “Visit Hospice”
I have begun referring to a troubling model of care as the “visit hospice.”
A visit hospice is exactly what it sounds like.
Each discipline makes its visit. Everyone completes the documentation. Everyone checks the box. Then everyone leaves.
What is missing is the very thing hospice was designed to provide, an interdisciplinary understanding of what is happening to the patient and what the patient and family will need next.
Hospice was never intended to be a collection of independent visits. It was designed to be a coordinated model of care in which every discipline contributes information that helps the entire team understand the patient’s condition, recognize decline, manage symptoms, prepare the family, and adjust the plan of care.
Without that coordination, hospice becomes little more than a visiting service.
A completed visit does not automatically equal good care.
The question is not simply, “Was the visit completed?”
The questions are:
What did we learn?
What changed?
What does that change mean?
What does the patient need?
What does the family need?
What is likely to happen next?
What are we going to do about it?
Presence Begins With Listening
Being present is not simply entering a room.
It is also not simply hearing someone speak.
There is a difference between hearing and listening.
We hear voices. We hear words. We hear televisions, call bells, movement in hallways, conversations in the background, and all the other noise surrounding a patient and family.
Listening is different.
Listening requires us to slow down, pay attention, ask questions, and understand the meaning behind the words.
A family member may say, “She just does not seem like herself.”
A caregiver may say, “Something is different today.”
A nursing assistant may say, “He did not eat breakfast, and he usually eats everything.”
A spouse may say, “I do not think I can do this tonight.”
Those statements may sound vague, but they are not insignificant. They are invitations to look more closely.
When we are truly listening, we do not wait for patients, families, or caregivers to use the correct medical terminology. We ask what they are seeing, when it started, how it differs from the patient’s usual condition, and what is worrying them most.
We listen for the change.
We listen for the fear.
We listen for the symptom that has not yet been clearly described.
We listen for the caregiver who is reaching the limit of what they can manage.
We listen for the patient whose condition may require us to go to the bedside.
Listening is not passive.
Listening is part of the clinical assessment.
When we truly listen, we begin to understand what needs to happen next.
Families Need to Understand the Journey
Hospice presence also means helping patients and families understand the progression of illness.
Families should not be surprised by the dying process.
They should understand why appetite is changing, why their loved one is sleeping more, why weakness is increasing, or why breathing and responsiveness may look different.
Prognostication does not mean predicting the exact date or hour someone will die.
It means recognizing the likely trajectory of illness and helping the patient and family understand what may happen next.
It means preparing the family before a crisis occurs, not trying to explain everything while they are frightened and overwhelmed.
Families should not have to search online in the middle of the night to understand what they are seeing. They should not be left wondering whether a change is expected, whether the patient is suffering, or whether someone from hospice will come.
Providing that information is not an optional courtesy.
It is part of the care.
The Interdisciplinary Team Must Turn Information Into Care
The interdisciplinary group is not simply a required meeting.
It is the clinical heart of hospice.
The nurse sees one piece. The hospice aide sees another. The social worker may understand the caregiver’s emotional and practical burden. The chaplain may hear fears the patient has shared with no one else. The physician brings medical judgment.
Together, those observations create a complete picture.
If the information remains isolated within each discipline, hospice loses its greatest strength.
The interdisciplinary group should not become a rapid review of patient names, visit frequencies, documentation requirements, and boxes that need to be checked.
The team should be determining what has changed, what those changes mean, what may happen next, whether the family understands, and whether the current plan of care still meets the patient’s needs.
Information gathered during a visit must travel back to the team. The team must then use that information to anticipate needs, revise the plan, assign responsibility, and prepare the patient and family.
If every discipline is visiting, but the team is not analyzing and acting on what each discipline is learning, the hospice is not functioning as an interdisciplinary team.
The disciplines may be working near one another, but they are not truly working together.
Hospice Follows the Patient Wherever the Patient Lives
The hospice obligation does not change because a patient lives in a skilled nursing facility, nursing home, residential care setting, or another facility.
The address changes.
The hospice obligation does not.
Too often, a hospice clinician reviews the facility chart, completes the scheduled visit, documents the findings, and leaves.
But the chart is not the patient.
Important changes may not yet be reflected in the medical record.
The staff members caring for the patient every day may know that the patient is sleeping more, eating less, requiring more medication, becoming harder to transfer, or experiencing new confusion, pain, restlessness, or breathing changes.
Meaningful assessment requires conversation.
“Tell me what has been happening with Mrs. Jones.”
“What has changed?”
“What is not normal for her?”
“What are you concerned about?”
These conversations are not incidental.
They are part of the hospice assessment.
Facility staff may be the first to recognize that something is different, but they should not be expected to diagnose the problem or determine its clinical significance.
Their responsibility is to report what they are observing.
Hospice must listen, ask the right questions, determine what the information means, and respond.
Silence in the chart does not mean that nothing has changed. Hospice clinicians must know the patient’s baseline, recognize deviations from that baseline, and gather enough information to understand what is actually occurring.
Sometimes Hospice Simply Needs to Go
One patient has stayed with me throughout my career.
A caregiver at a residential facility called hospice after the patient fell. The caregiver explained that the patient had been placed back in bed and appeared to be having pain.
Something about the report did not sound right.
I told our nurse, “Please go make a visit. This patient needs to be assessed.”
When the nurse arrived, the patient’s foot was visibly rotated.
The patient had fractured a hip.
I have never blamed the facility staff.
They were not expected to diagnose a fracture. They recognized that something was wrong. They called hospice. They did exactly what they should have done.
Hospice had to do the rest.
That story illustrates something fundamental.
Families are not clinicians.
Facility caregivers are not hospice nurses.
Nursing assistants are not expected to diagnose an injury or determine prognosis.
A telephone report from a nonclinical caregiver cannot replace a clinical assessment.
Sometimes telephone guidance is appropriate.
Sometimes the only appropriate response is to go.
Pain and Symptom Needs Do Not Follow Business Hours
Pain and symptom needs do not keep business hours.
Pain may escalate in the middle of the night.
Breathing may become more difficult on a weekend.
Agitation, nausea, secretions, confusion, falls, medication concerns, and caregiver exhaustion may occur at any hour.
Patients and families do not choose when these needs arise.
Facility staff do not choose when a resident declines.
Pain and symptom management is a 24-hour hospice responsibility.
Telephone triage is important, but it is the beginning of the clinical response. It is not a substitute for a bedside assessment when a bedside assessment is needed.
The person receiving the call must listen carefully, ask enough questions to understand what is happening, consider who is reporting the change, and determine what the patient needs.
When pain or symptoms cannot be adequately assessed or managed by telephone, hospice must make an in-person visit.
Patients and families should not be left to manage uncontrolled symptoms alone because the office is closed.
The question should not be, “How can we manage this call without making a visit?”
The question should be:
“What does this patient need from hospice right now?”
Hospice must be available and prepared to assess, intervene, and come to the bedside 24 hours a day, 7 days a week, 365 days a year.
Full stop.
The Emergency Department Cannot Become the Default Response
There will be situations in which emergency care is appropriate.
But calling 911 or sending a patient to the emergency department cannot become a substitute for hospice assessment.
When a patient, family member, nursing facility, or residential caregiver calls hospice, they are asking for help. They are asking hospice to determine what is happening and guide them through what comes next.
When hospice simply tells the family or facility to call 911, the patient may be transported to an unfamiliar hospital, separated from familiar caregivers, and placed in an environment that may not reflect the patient’s goals.
The patient and family may arrive at the emergency department, frightened and overwhelmed, only to be asked:
“Why are you here? Isn’t the patient on hospice?”
Then, after the hospital visit, the family may be told that the episode resulted in revocation of the hospice benefit, whether or not they understood that consequence when they followed the direction they were given.
The family believed it was asking hospice for help.
Hospice did not come.
The patient went to the hospital.
The family later learned that the hospice benefit had ended.
That should concern every hospice leader.
Hospice must assess the patient, explain the options, communicate clearly, and help the patient and family understand what is happening and what each decision may mean.
That is the work.
When Visits Occur but Hospice Is Missing
This is what I mean when I use the phrase “poor care, no care hospice.”
I am not referring to individual clinicians. I know extraordinary hospice professionals who give everything they have to their patients and families.
I am describing a model of care in which activity has replaced presence.
Visits occur, but the information is not connected.
Voices are heard, but concerns are not truly understood.
Meetings are held, but interdisciplinary thinking does not occur.
Families are not prepared for decline.
Facility staff cannot reliably reach the right clinician.
After-hours calls are managed by telephone when the patient needs someone at the bedside.
Patients and families experience all of that as one thing.
They experience it as being alone.
The Hospice Promise
Patients and families should never have to coordinate their own hospice care.
Facility staff should never have to wonder whether anyone understood their concerns.
Families should never have to educate themselves about the dying process because no one explained it.
Hospice should listen.
Hospice should anticipate.
Hospice should educate.
Hospice should communicate.
Hospice should coordinate.
Hospice should assess.
Hospice should respond.
Hospice should be present.
I did not learn hospice from a manual alone. I learned it from the people who showed me what it means to care for patients and families with clinical skill, compassion, honesty, and presence.
I have Hugh, Esther, David, Bob, J.R., Barbara, Ian, Peggy, Deidra, Patty, and so many others to thank for my hospice education.
Their lessons have stayed with me throughout my career. They taught me that hospice is not simply about completing a visit. It is about understanding what is happening, anticipating what comes next, responding when the patient needs us, and never leaving a patient or family to walk this journey alone.
The best way I can honor what they taught me is to continue insisting on the standard they modeled.
Hospice is not simply a visit.
It is a promise to walk with patients and families through the final chapter of life with knowledge, compassion, clinical excellence, coordination, and unwavering presence.
That is the standard our patients and families deserve.
That is the hospice promise.
And we must keep it.
