A recent visit to a very sick friend (let’s call her Ellen) coincided with the weekly visit from her hospice nurse. Having worked for many years on projects to improve care for the end of life—including hospice programs, which are good but not perfect—I was happy to see ideas that we had promoted actually in place. For instance, when Ellen’s husband, Paul, asked about her restless sleep, the nurse asked him to get the emergency medication box that the hospice had left and explained to him how to administer an anti-anxiety medicine. I had first seen such a box proposed in a quality improvement breakthrough series more than 15 years ago.
Paul wanted to know if someone could trim Ellen’s toenails. Although she is wheelchair bound, the long nails bothered her. Her adult daughter had tried but could not trim them. Paul wondered whether the home health aide might do it on her next visit, but the nurse said that toenail cutting was not in the aide’s scope of practice. She suggested that Paul call a local podiatrist, who, given a few weeks, might make a house call. She added that such foot care might not be covered by their hospice benefit. The cost was no issue, but finding someone to provide such care was. I suggested finding someone to do an in-home manicure—and discovered that this practice is illegal in Maryland.
The hospice experience had engendered several surprises. The family was perplexed when the first question asked during a home visit had to do with their gun ownership. One could see why in terms of employee safety, but it simply made my friends wonder whether hospice thought that murder or suicide might be an option.
Ellen and Paul appreciate the home health aide, but her visits are unpredictable and infrequent. Thanks to their own long-term care insurance, they have hired a private-duty caregiver. She provides companionship and respite for Paul, who keeps the endeavor going.
Recently, my mother happened to be visiting Ellen late on a Friday afternoon when a nurse’s visit coincided with one by the home health aide. The aide was concerned about a possible urinary tract infection (UTI), along with Ellen’s incontinence, and wanted the nurse to address both. But the nurse became gruff and irritated, apparently anxious to call it a day. She eventually inserted a catheter and agreed to test for the UTI, but only at the aide’s insistence.
When hospice first became a part of the American medical lexicon, it worked to reclaim dying as a part of life and to move people from the barrage of hospital and medical interventions to the comforts and familiarities of home. Hospice aimed to put the brakes on endless medical interventions, acknowledge that people die, and provide the kinds of community and family supports people need. It became a Medicare benefit widely available to mostly older adults. When constructed as a Medicare benefit, it aligned with what “dying” cancer patients experienced and needed, and so the benefit featured elements such as establishing a 6-month prognosis, foregoing curative treatments, and relying on a family caregiver.
In the decades since, hospice has made real strides and improvements in how we care for the dying and how we talk about and respond to death. But what began as a grassroots movement by religious and community groups has matured into a $17 billion-per-year industry. While hospice serves millions of dying people each year—and, by all accounts, serves most well—the model itself may need to be redesigned to serve people whose “dying” now includes living for a few years with increasing disability. Coupled with allegations of misuse and fraud, especially in the for-profit industry, it may be time for thoughtful and straightforward studies into what we might do differently.
My friend’s experience seems to mirror and amplify shortcomings in the structure of the Medicare hospice benefit and barriers in delivering the kinds of care and support that so many very sick people and their families need. Several years ago, Joanne Lynn, MD, and her colleagues wrote about what they called “Bridges to Health,” defining specific categories of health and illness and the services and treatments that each cohort needed most. They subdivided “dying” into three trajectories: people dying from illnesses like aggressive cancers, which are somewhat predictable and relatively quick; people dying with organ system failure, a more unpredictable path punctuated by rescue and some level of recovery, as well as the need for help in coping with exacerbations, decline, and uncertainty; and frailty, the path endured by people with advanced old age, with or without dementia, and their families, which usually requires a few years of ongoing support, medical treatment, and caregiver help.
The Medicare hospice model works well for people on the fairly predictable and short first trajectory. For those on the other two paths, it proves problematic for both patients and providers. Late last year, The Washington Post ran an article describing some of those problems, particularly among patients who have heart disease or dementia, outlive their prognosis, and need hospice-like services for years, not weeks. The article, “Hospice Firms Draining Millions from Medicare,” described the “problem” of “hospice survivors,” meaning people discharged alive from hospice—who were supposed to have died. The Post reported that hospices have a financial incentive to enroll healthier people for longer lengths of stay: Hospices are paid about $150 per day per patient in routine care, regardless of the services actually delivered that day. This payment structure creates an incentive for hospice to enroll people who will probably have a number of days in hospice in which few services are needed, which means they have an incentive to enroll people in the latter two trajectories.
The article generated a firestorm of responses and controversy, including more than 800 comments on the Post’s website and a three-part response featured on http://www.pallimed.org, a popular hospice and palliative medicine blog. A week after the Post article ran, Paula Span of The New Old Age wrote “Bounced from Hospice,” describing the plight of an 84-year old Pennsylvania woman who was eventually bumped from hospice eligibility because she was no longer losing weight or declining, so the services that hospice had offered and her family valued, including companionship, feeding, and bathing, ended.
Many advocates suggest that palliative care offers the bridge people need, designed to offer supportive care to people living with serious and advanced illness and disease. Palliative care would aim to provide symptom relief and management while working in tandem with providers focused on ongoing interventions to prolong life. It would also coordinate multidisciplinary care, including services from social workers, physical therapists, and more. For now, the challenge remains that most palliative care programs are hospital based, subject to and limited by what insurers and Medicare will pay.
Meeting those needs really requires that we really explore and understand what it means to be very old and very sick and the specific needs, preferences, and challenges that people face. My friend, for instance, now needs someone with her 24/7, as she is no longer safe by herself. This is a short-term situation, and her family can string together round-the-clock coverage for now. But if her need were to persist for many months or years, “stringing it together” would become impossible. In our current system, most likely she would end up in a nursing home. We simply do not have the funds, systems, or structures to do much else for her.
It is possible, however, to imagine what else we might do. Some models, including MediCaring, offer alternatives that would help very old people. MediCaring would rebalance what we spend on medical treatment with what we spend on social services and supports, using savings from the former to fund the latter, and would structure local authorities to respond to local needs. MediCaring would build on individual care plans developed to anticipate and accommodate an array of needs and then would evaluate how well the system responds to those needs. Volunteers from a Caregiver Corps might provide families with companionship and support or bring new energy and ideas to programs that serve older adults. Any number of public and private programs could be developed to learn more, test new strategies, and spread what works.
We need to push our elected leaders to enable development of new models, and we need to complain when things go wrong, both to those responsible and to leaders of health care organizations and public agencies. Medicare beneficiaries or the people who love them can file complaints to their Quality Improvement Organization for investigation. In fact, I did this a few years ago on behalf of a family friend who had endured much suffering in hospice; eventually the hospice was ordered to address its inadequate 24/7 response time, develop a quality assurance plan, and offer providers training to enhance empathy.
Ongoing debates about health care reform and payment have left many in the field scrambling to protect their turf, their profession, or the status quo. In our scramble, we often lose sight of the more salient concerns about serving people effectively and reliably, recognizing their needs and doing our best to meet them. Our reluctance to explore or acknowledge shortcomings in current programs prevents us from considering ways to improve. It may be that we need to find ways to see ideas in opposition and in tandem—that hospice does well, for instance, but must be designed differently for some. We surely do not lack opportunities to do a better job. In fact, most days, we simply live through opportunities and make the most of what we experience. We do not quite know what to do or how to change what is happening. We fear speaking up or asking for changes. In that complacency and fear, we lose time, fretting over how to get someone’s nails trimmed, when we’d rather spend time holding them, gathering our love into our arms while we can.
Ed note: This article originally ran on the Health Policy Forum of Altarum Institute on Feb. 6. Ellen died on February 11, the end of a long battle in which her strength, resilience, and good humor inspired all who loved her.