It is understandable but unfortunate that family members frequently hesitate to broach the subject of end of life care. Instead of avoiding the subject, have a sensitive and frank discussion of hospice as a vehicle for comfort care, pain relief, and counseling for the patient and the family members.  A growing body of literature indicates that the setting for hospice services may be impactful.

Growth in hospice services is soaring, with 2016 Medicare spending for hospice related goods and services reflecting an estimated 53 percent increase since 2006. See U.S. Dep’t. Health and Human Services, Office of Inspector General, Vulnerabilities in the Medicare Hospice Program Affect Quality Care and Program Integrity: An OIG Portfolio, OEI-02-16-00570 (July, 2018). Medicare will pay for general supervisory services, an interdisciplinary plan of care services by hospice physicians, and four levels of hospice care, which range from routine in home care, general inpatient care for pain control or symptom management that cannot be controlled outside of a hospice inpatient unit, a hospital or a skilled nursing facility.

The hospice benefit is much more than pain relief and palliative care. A panoply of end of life services may be available. Such services may encompass care provided by specially trained doctors, nurses and home health aides, medical equipment including hospital beds, wheelchairs and walkers, catheters, bandages and other medical supplies, pain management medication, dietary counseling, grief counseling for the patient and family members, speech therapy (to facilitate swallowing) and short-term respite care. The trade-off for the Medicare hospice benefit is that by electing hospice, the patient waives the right to receive curative treatment funded through Medicare. This can be a very difficult decision.

In addition to Medicare, other sources of funding for hospice services include most states’ Medicaid plans, the Veteran’s Administration or private insurance. Click here for more information. Dual eligibles, who are enrolled in both the Medicare and the Medicaid programs, can have hospice covered by Medicare, with Medicaid paying for the patient’s room and board in an institutional setting.  A much smaller percentage of hospice enrollees have their hospice financed through Medicaid.

Hospice services are most typically provided in a private home setting, with those patients who are medically complex receiving more nursing services than those residing in an assisted living or skilled nursing setting. The 2018 OIG report cited concerns with the adequacy of services and the quality of care to hospice patients residing in skilled nursing facilities and with those receiving hospice care in an inpatient setting. According to the 2018 OIG report, an estimated 31 percent of hospice enrollees in a skilled nursing setting are not receiving all of the services outlined in their hospice care plans, and in an estimated 9 percent of inpatient hospice stays during 2012, hospices did not provide adequate nursing, physician or medical social services.

The OIG report also found that hospices failed to meet plan of care requirements in an estimated 85 percent of general inpatient care stays in 2012. Where the hospice enrollees symptoms or pain could not be effectively managed, the beneficiaries were potentially left in pain for days. The OIG report cites an example of a hospice billing Medicare on behalf of a 101-year old beneficiary diagnosed with dementia, with uncontrolled pain during the 16 days of general inpatient care. The OIG report alleges that the hospice did not change the patient’s pain medication until the last day and did not provide him with a special mattress for more than a week.

CMS’ HospiceCompare website, a relatively new online tool intended to facilitate decision-making regarding which of several local hospices to select, was criticized in the OIG report because it “…does not include critical information about the quality of care provided by individual hospices and offers no information about complaints filed against individual hospices. “ OEI-02-16-00570 (July, 2018), at page 7. Complaints against hospice companies may be filed with state licensing agencies and/or the Joint Commission on Accreditation of Health Care Organizations.

According to the OIG report cited above, the greatest increase between 2010 and 2016 was in hospice enrollees in assisted livings, which increased 64 percent in number. One take away is that in selecting an assisted living facility, your clients will need to know whether and by whom hospice services, if needed, can be delivered in the assisted living facility of their choice.

There is a growing body of medical literature supporting the proposition that the setting in which hospice services are delivered can potentially impact the quality of hospice care as well as the satisfaction of both the hospice beneficiary and the family. This impact was the focus of a recent medical study published in the Journal of the American Geriatrics Society. Kathleen T. Unroe, M.D., MH.A., Timothy E. Stump, M.A., Shannon Effler, M.S.W., Warizhu Tu Ph.D., Christopher M. Callahan, M.D., Qualify of Hospice Care at Home vs. in Assisted Living Facility  or Nursing Home, J. American Geriatrics Society (Feb. 10,. 2018). The article summarizes the results of a retrospective cohort study of 7,510 individuals receiving hospice services and notes a positive correlation between the receipt of hospice services in a private home or an assisted living setting and higher levels of patient care and patient and family satisfaction. By contrast, the study reported a lower correlation between hospice services in a nursing home setting and patient care and patient and family satisfaction levels. The study measured the incidence of important patient concerns in several areas including emotional support to the patient and the family, delivery of services to the patient, and communicating issues. For instance, 67.8 percent of patients receiving hospice services in the home reported excellent overall service quality, as did 64.3 percent of hospice patients receiving the services in an assisted living setting, contrasted with only 55.1 percent of hospice patients in a skilled nursing facility. Overall, 5.7 percent of the study’s answering participants reported a problem with hospice personnel not knowing the patient’s medical history, with 5.5 percent reporting having experienced this in a home setting, 5.3 in an assisted living setting but rising to 6.3 percent of individuals receiving hospice services in a nursing home.  Approximately 27.7 percent of the study’s respondents reported that the family was not always kept informed about the patient’s condition. This was reported by 21.2 per cent of respondents receiving in home hospice services, 32.8 percent of responders who received hospice in an assisted living setting and 35.2 percent of responders experiencing hospice services in a skilled nursing environment. Likewise, 4.7 percent of responders overall reported less than optimal pain management, with 4.5 percent of responders receiving hospice services in the home, and 3.9 percent receiving hospice services in an assisted living facility reporting this, as contrasted with 5.5 per cent of responders receiving hospice services in a nursing home.

Questions? Let Jane know.

Jane Fearn-Zimmer is an Elder and Disability Law, Taxation, and Trusts and Estates attorney. She dedicates her practice to serving clients in the areas of elder and disability law, special needs planning, asset protection, tax and estate planning and estate administration. She also serves as Chair of the Elder & Disability Law section of the NJSBA.