I’m a Hospice Physician. There’s One Thing I Dread Telling My Patients.

Prasert Krainukul/Moment

Sign up for the Slatest to get the most insightful analysis, criticism, and advice out there, delivered to your inbox daily.

Tom was dying, and managing his condition at home was increasingly difficult. He had metastatic cancer, and was starting to become more confused and agitated. He was falling frequently, and his pain was excruciating, despite escalating around-the-clock pain medications, which were becoming harder to swallow and were not being properly absorbed by his body. He no longer had the strength to even toilet himself.

His wife Sue was in survival mode. A few sleepless nights turned into weeks without rest, during which she was constantly trying to manage Tom’s symptoms and take care of his basic needs. It was impossible for her to think beyond the current second of time.

I’m a hospice physician, and it’s at junctures like this that I can offer a life vest that completely changes the end-of-life experience. Tom was under routine hospice care, which means he was provided medications, medical equipment, and intermittent support from a professional nurse. Under routine care, families have to pick up significant caregiving duties; for Sue it was becoming too difficult because Tom was having severe pain along with mental agitation. I told Sue that I thought Tom should transfer to our inpatient hospice facility. “You have done everything possible for Tom at home, it’s too much to ask of you or anybody,” I said. “He needs a higher level of care.”

I knew this was the right decision. It’s the kind of care I pray to receive myself at the end of my own life.

It took some convincing to get Sue to say yes. Getting a devoted spouse to agree to move their dying partner out of the home isn’t always easy. But a few days after Tom arrived at the inpatient hospice facility, Sue cried tears of appreciation describing the daily baths the caretakers there gave him. With around-the-clock intravenous medications for pain and anxiety he now appeared comfortable.

A patient qualifies for hospice when they have a terminal illness with a prognosis of six months or less based on the natural progression of their disease. Hospice does not usually provide 24/7 private care or the physical place of residence for the dying; typically, people with a terminal diagnosis who opt against further medical interventions die at home, and with significant caregiving duties provided by someone in their family or hired privately. The only place where people receive 24/7 care by hospice-trained professionals are inpatient hospice facilities.

Inpatient hospice facilities have the atmosphere of a bed-and-breakfast, or a birthing center, but for the dying. The environment is warm and calming. They are not like a hospital: No freezing temperatures, no incessant beeping, no antiseptic odor smell.

“I feel like I’ve brought my wife to heaven,” one husband told me. This is the first time I’ve finally been able to sleep knowing my mom is getting good care, I hear from nearly every exhausted adult child. This place is the calm in the storm is another common piece of feedback.

Yes, there is heartbreak and death in every room. But there is also meaning, love, healing, prayers, reiki, photographs, beautiful music, warm lighting. At times there is even laughter, and fresh-baked cookies.

We can deliver medications through discrete needles, allowing for quick and effective symptomatic control. And people don’t die alone: We allow visitation any and all hours of the day and night. Pets are allowed to visit, too. There are physicians, nurse practitioners, nurses, chaplains, social workers, volunteers, and aides to come sit and say, It’s OK to be scared, it’s OK to worry, it’s OK to say goodbye.

I also work with patients who are under routine care at home or in an assisted living or a nursing facility. To me it’s clear that continuous attention provides a better experience, for patients and their loved ones. But most hospice patients will never be able to access inpatient hospice care. In fact, most hospices across America don’t even have inpatient hospice facilities because they are expensive to build, staff, and maintain, and ultimately depend heavily on philanthropy to both build and cover ongoing operations. Instead, dying patients only see a hospice nurse approximately once per week and are able to call a hospice triage nurse 24/7. They rarely—or never—see a hospice physician.

The average cost of routine hospice at an inpatient hospice facility is $350 a day. Medicare will only cover inpatient hospice care under very specific circumstances. Families can request “respite care” for five days at a time to get temporary relief from serving as caregivers. Patients can also meet a General Inpatient Hospice level of care. The GIP level of care is intended to cover the time it takes to stabilize a crisis of acute symptoms that cannot be managed in any care setting other than a Medicare-certified inpatient hospice facility (or a contracted hospital or nursing facility). Once a patient’s symptoms are stabilized, the payment for room and board ceases, and the patient is considered to be in a routine level of care.

GIP is only approved when there is a crisis of physical symptoms such as pain, vomiting, seizures, or difficulty breathing. In 2021, only about 1 percent of all hospice days in the United States qualified for the GIP level. Medicare specifies that GIP is not appropriate for situations where a patient’s caregiver support has simply broken down. Complete caregiver breakdown would also not qualify someone for respite care, because respite care is specifically designed to be temporary relief. The primary burden still falls on the patient’s support system, if they have one, to simply figure out how to manage.

Every day I have to disappoint referring health care providers, patients, and loved ones, by sharing that their clinical situation does not meet the GIP level of care. But they are in crisis—they are dying, I am told again and again. Unfortunately, the definition of a “crisis” at end of life is very different for hospice providers. I must tell patients and their loved ones upon admission to the inpatient hospice facility, and then daily, that once stabilization of the immediate physical crisis has been achieved, they have to return to home—or start paying out of pocket.

Sue and her sons both welcomed and feared my daily arrival in Tom’s room, knowing that I would provide medical knowledge and emotional support—but that I also needed to discuss the potential for discharge home. As Sue later told me, “To have been returned home would have felt emotionally and physically traumatizing for Tom, me, and my sons and our family.” Tom ended up oscillating between GIP and routine levels of care at our inpatient hospice facility, therefore intermittently needing to pay the room and board costs. Not all patients are lucky enough to have those funds.

I am committed to adhering to the regulations that govern hospice care, and to upholding my clinical responsibilities as a physician. But I can’t deny the complex thoughts and emotions these rules engender. I sometimes feel a sense of relief if someone dies quickly while on GIP so that we don’t have to navigate a transition back to routine hospice care (typically at home or in a nursing home). I pray that someone has excellent commercial insurance which will authorize a week or two—or even a month—of GIP-level care days, while Medicare typically covers just five days. But most of my patients rely on Medicare.

I worry daily as an inpatient-facility hospice provider about how, when, and with whom to have these difficult conversations about financial and discharge planning while people are exhausted, overwhelmed, and grieving. I feel guilty for how much additional stress I cause loved ones in what are already the worst moments of their lives. I used to be an oncology hospitalist for incredibly sick patients in the hospital. These patients, too, were actively dying, but because we were ordering invasive tests and procedures, and not acknowledging the dying process, insurance kept paying. That care felt highly depersonalized. I am angry that I have to worry about difficult financial conversations now that I am providing care that I feel is, in many ways, better. And ironically, care at a hospital is more expensive than care at an inpatient hospice facility.

Our health care system currently values fee-for-service: We reward procedures, tests, and interventions. Death is the enemy to be fought at all costs. The sacred and physically personal work of guiding someone through their last days does not fit neatly into billing codes. We have to work toward accepting that death is a normal journey of the human experience, one that can be medically complex, emotionally overwhelming, and logistically demanding. If Medicare covered inpatient hospice care, it would humanize the end-of-life care experience, surrounding people with the interdisciplinary expertise of hospice workers. The end-of-life experience that Tom and his family received in his final days should be the norm, not the exception.