Why is it so hard?
By Charlotte Grinberg
“I want to go home with the time I have left. I want to be with my children.”
Susan was sitting in the sunroom of the medical oncology floor. A hospital blanket, the ones that are never warm enough, was draped over her shoulders and the shoulders of her older sister. You could immediately tell they were sisters, but also best friends. They looked healthy and strong, both in the sixth decade of life. But Susan had a tumor in her brain and would likely soon die from it.
This was a family meeting. Susan’s two daughters were also in the sunroom. Victoria, the older daughter, sat to the side, while Rachel sat next to her mother, holding her hand. They probably never imagined being in this situation in their 20s. I wondered if they were as close as sisters as their mother and aunt are.
I was there as a resident physician in a palliative care rotation. I quietly observed the other doctors, the case manager, and the nurse. Compared to other patients I had met on this rotation with cancer diagnoses, Susan was clear and comfortable with her decision to transition to comfort-focused care in her home. The point of this family meeting, however, was to explain to Susan and her family that this was not realistically possible.
“What do you mean I can’t go home?” she asked. “I want to be with my children.”
Susan’s tumor had damaged her ability to form short-term memories. She could walk, talk, and think, she just couldn’t remember things. She forgot to turn off the stove, and was often found wandering her neighborhood. She needed constant supervision to be safe.
Her daughters were caring for her, but also working full-time jobs. Rachel began to cry as she described weeks of waking up several times every night when mom came into her room asking questions. Victoria didn’t say a word. Maybe she felt guilty for living with her boyfriend instead of being with her mom and younger sister. Rachel cried even more when she described feeling detached from the world, scared, and overwhelmed by caring for her mother. It was that sense of being overwhelmed that led her to dial 911 because her mother still kept wandering outside. That’s how Susan ended up in the hospital.
With the rise of an aging population and the number of people with serious illnesses, the field of palliative and hospice care is growing. One of the many roles of palliative and hospice care providers is to learn the communication skills necessary to help patients navigate their wishes for end-of-life care. Also growing is the preference of patients, caregivers, and clinicians for patients to live their final days in the warmth of a home, away from the incessant interventions of hospitals.
At least for now, though, our medical system does not financially support caring for dying people at home the same way it supports caring for them in a hospital, rehabilitation facility, or long-term care facility. Patients who choose to leave the hospital for home hospice receive only limited services from their medical insurance through the hospice benefit. Families must provide or privately pay for all personal care services: bathing, dressing, eating, toileting, administering medications, and moving around, all of which are physically and emotionally exhausting for a caregiver and occur throughout the day.
When patients and families realize they must provide this care, some elect for ongoing hospital interventions or discharge to a rehabilitation center or long-term care facility. These options are paid for and so seem like the next logical step, even though their preference, and the patient’s, is to be at home.
It took a week to figure out a safe discharge plan for Susan. Her family members needed to visit the long term-care facilities covered by her insurance. Then they had to choose one, and the insurance company had to authorize her stay there. Given a mean hospitalization cost of $2,543 per day, this one-week delay may have cost the insurance company on the order of $18,000.
What Susan’s family really needed was assistance at home for 10 hours a day while they worked. Round-the-clock care costs an average of $480 per day, meaning that seven days in the hospital could have covered a home health aide’s salary for a month.
Unlike Susan, many patients aren’t discharged after one week. They stay in the hospital for weeks, even months, until they die because there is no safe discharge plan in place.
I’ve seen this situation again and again, and I’ve only been doing this for a few years: the patient is too weak or medically unstable to go to a rehab facility and no one is available to safely care for them at home. And now, in the era of coronavirus, which has called into question the nursing home industry, it is even more important to look into alternative insurance funding models for hospice at home as a potential win-win for insurers and patients.
Susan’s daughters and sister took leaves from their jobs to make possible Susan’s wish of being home with her family. It was too painful for them not to honor her end-of-life preferences. Yet they became overwhelmed, exhausted, and financially stressed, and eventually returned Susan to the hospital for placement into long-term care, which resulted in a second prolonged hospitalization.
If our health system provided what they needed — supportive, tailored home care — they could have focused on what mattered most: spending quality time with Susan during her last days.
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