It has become increasingly popular to promote home as a setting for both sophisticated medical treatment and long-term care, and often for good reason. But supporters of this trend need to recognize and reduce the burden it places on families who must take on ever-challenging clinical and organizational roles to make home care work.
Hospital at Home; SNF (Skilled Nursing Facility) at Home; and home-based long-term care have great benefits. They allow people to remain in a setting that is familiar and comfortable. They may reduce anxiety and risk of infection. They may be less costly.
But they also require family members to act, more than ever, as registered nurses, care coordinators, and medication experts. With little or no training, they are asked to do everything from maintaining complex medical devices and equipment to organizing multiple doctors and home care agencies to tracking and administering multiple medications. All that on top of providing love and support in the most challenging of circumstances.
In effect, these models save the health care system money by shifting the work from paid professionals to unpaid family members.
Two recent experiences highlighted just how hard this is. Both involved friends who are expert in the long-term care system and whose families had the financial resources to pay for care. And both found that, even with knowledge, expertise, and money, pulling together all the threads of home care is really, really hard.
Anne Tumlinson runs a consulting firm that advises institutional clients in how to break down the barriers between medical care and long-term supports and services. Understanding the gaps and how to fill them is what she does. Yet, when her dad got sick, she learned first-hand to difficult it is make the system work.
Anne wrote a terrific column about her experience for the journal Health Affairs. You can read it here.
Here is a short summary: Her dad had a rare, progressive blood disease. He and Anne’s mom lived in their home in state far from Anne.
Her father needed relatively complex medical treatment, including blood transfusions. But he wanted to get care at home, which should have been more comfortable and safer for him and vastly less expensive for Medicare.
But organizing that care largely fell to Anne, and it took all of her skills. Getting nursing visits at all required navigating a maze of complex rules. Getting them at the frequency her dad needed them was impossible. He could get needed care by traveling to a doctor’s office or a hospital. Medicare would pay for that without question. But at home? That broke the rules, or at least the home health agencies thought it did.
Thus, much of the skilled nursing work fell to Anne’s 81 year old mother. Managing home oxygen. Maintaining an intravenous catheter called a PICC line. All without sufficient training. “It is easy” said the nurse who showed her how before he breezed out the door.
Then there was managing all the visits the agency did provide. When nurses did come, it often was with little notice. Sometimes a nurse and therapist arrived at the same time. Anne juggled her own business with the hours she spent on the phone acting as a care coordinator, just for services provided by the home health agency. As Anne wrote, “if we ‘move health care home,’ without appropriate solutions… for service coordination, we’re going to turn family caregivers and patients into switchboard operators.”
The time it requires
Just as I read Anne’s column, I heard from another friend. He is a financial expert who advises advocacy groups and other clients about Medicaid long-term supports and services. And he is helping his family set up home care for a cousin recovering from a brain hemorrhage.
Here is a slightly edited section of a recent email he sent me:
“So far, [we] have:
- Hired, trained, transported, and settled in a full-time live-in caregiver.
- Converted the dining room into a first-floor bedroom.
- Set up on-going home-delivered physical, occupational, and speech therapy after a disappointing stay at an acute rehab facility.
- Designed and almost finished installing a fully accessible bathroom.
The extraordinary thing is how much time it requires from so many family members to get it right. And that is apart from what will surely be $120,000 in unreimbursed first-year costs (after what is covered by a reasonably good health care policy).”
Working multiple jobs
If my two friends, with assets and expertise, struggle, what is it like for people without those advantages? A family caregiver in Burlington VT put it best: “You can’t do this, “ she said, “and keep a 9-5 job.”
She’s right. A study last year by the Rosalynn Carter Institute for Caregivers found that one in five full-time workers cares for a family member with a serious illness or disability. Nearly 20 percent of them said they had to quit their job and 40 percent said they had to go to part-time work.
More of us will get the care we need at home: But don’t forget, that will put a greater burden on their families. The least health care providers and payers can do is support them by better coordinating the treatments and supports they must navigate.