As much as we talk about “coordinated care” in health care today, it is regrettable that most people still contend with an uncoordinated, inefficient and stressful system at the end of life.
Often, health care professionals are singularly focused on eliminating illness and find themselves ill-equipped to provide the comfort and guidance needed when a person’s illness requires care rather than, or in addition to, a cure. Families who don’t know that there’s an alternative stand helplessly by as the last months of life get swallowed up by costly, sometimes unnecessary treatments that can hurt more than they help.
Health care consumers and policymakers must be aware that it doesn’t have to be this way. In an increasingly broken and fragmented health care system, hospice care – the nation’s first coordinated care model – shows how health care should and can work at its best for patients at the end of life.
A grassroots movement that began over 50 years ago, the success of the hospice model led to its adaptation into Medicare in 1982 — a mere four years after it began as a demonstration program. Today, an estimated 1.7 million Americans receive hospice services each year, with 1.4 million Americans choosing to utilize hospice through their Medicare benefit.
Expert medical care, pain management, emotional and spiritual support services are all provided and tailored to the patient’s and family’s needs. Hospice caregivers represent a comprehensive, interdisciplinary team of physicians, nurses, social workers, chaplains, volunteers and other professionals that ensures the patient is cared for beyond just his or her medical needs. Hospice respects the dignity of the patient’s life, honors his or her choices and provides a care plan reflective of a patient’s values. This philosophy of care is illustrative of hospice’s legacy and commitment to the best care for every hospice patient.
It’s a system that thrives because hospice providers understand how to balance the patients’ wishes with their health care needs – and coordinate care accordingly. This investment in care actually saves Medicare money – by one estimate, as much as $2,300 per patient — not at the expense of the patients, but rather by allowing the patients and their caregivers to guide decisions that can reduce their use of hospital-based treatments, resulting in fewer complications and side effects.
Despite more than 35 years’ success in the Medicare program, inevitable changes in our health care system could threaten hospice’s effective, original system of coordinated care. A rash or untested policy shift could lead to care delays, limitations on patients’ ability to select their preferred provider or a loss of autonomy for the hospice medical directors.
Change is inevitable and can often be good, but it must be incremental change that does no harm and respects patient and caregiver choice for more, rather than less, options for addressing serious illness.
While the goal of hospice care is not to save lives, it is still often called “lifesaving” by patients’ families. After experiencing the confusion and frustration of fragmented care, many are overwhelmed by the quality, compassion and personalized service that hospice care delivers. The hospice model exemplifies these principles of quality, compassionate and personalized care that beneficiaries, payers, policymakers and their constituencies want.
No patient or family should suffer needlessly at the end of life – and that includes either physically or emotionally. America is getting older, but members of the hospice and palliative care community are prepared to meet the growing need for more hospice care. And we are ready to do so in a way that is driven by our patients and their families.
Doing so demands that any health care reform allows hospice to continue to build on our successful foundation – and expand our patient and family-centered model across the care continuum. Protecting that continuity is essential to care for all patients with serious, advanced and life-limiting illness.
Rather than just trying to make hospice more like the rest of the health care system, how about making the rest of the health care system more like the original coordinated care model? Coordinated care should be more than a popular health care buzzword. It should be the driving force for all health care everywhere – just as it currently is for hospice.
It’s the model and philosophy that have driven hospice’s success and changed lives for the better. It is a model that we will continue to fight for and for policies that support peace, comfort and quality at the end of life.
Edo Banach, JD, is president and CEO of the National Hospice and Palliative Care Organization.
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