Palliative care, a form of patient-centered care focused on quality of life for the seriously ill, should be the standard of practice for all elderly patients with complex illness in nursing homes.
Advances in medicine and the aging of the baby boomer generation are contributing to a growing population of elderly people who are living longer with chronic illness. The number of people living in long-term nursing facilities in the US is expected to double to more than 3 million by 2030, while more than 40% of adults will die there. Increasingly, nursing homes are responsible for both the long-term management of patients with multiple complex and chronic illnesses, and the care of these individuals at the end of life.
Today’s nursing homes are falling short on delivering the high quality care their residents deserve. Limited resources, overwhelmed and undertrained frontline staff and beleaguered leadership are all part of the problem. Inadequate pain management in nursing homes is common and well documented, as are pressure ulcers, the use of physical and chemical restraints and feeding tubes. Little attention is given to advance care planning, hospice referrals are often made too late or not at all, and repeated avoidable hospitalizations are widespread. Hospitalizations regularly result in medication errors, hospital acquired infections and other adverse events and poor communication of new care plans.
More than two-thirds of long-stay nursing home residents suffer from moderate-to-severe dementia. The late stages of dementia are characterized by several sources of suffering and obstacles to quality of life: fear, depression, confusion and physical symptoms such as pain, coughing, choking, shortness of breath, agitation and weakness. Nearly all family members of nursing home residents with advanced dementia say that comfort is the primary goal for their loved one. Yet only a small minority of dementia patients receive either palliative care or hospice care before death, and repeated hospitalizations and use of feeding tubes are common.
Tomorrow’s nursing homes must strive to be different. The integration of palliative care into nursing homes offers a compelling solution. Palliative care is specialized medical care for people with serious or complex illness, focused on providing patients with relief from symptoms and distress. The goals of palliative care address patient’s needs for communication, decisions about treatment, relief of distressing symptoms (such as pain from pressure ulcers or arthritis) and support for caregivers.
Unlike hospice care, palliative care can be delivered at the same time as life-prolonging disease treatment, and eligibility depends on need — not on prognosis. Reimbursement for hospice care under the Medicare Hospice Benefit requires that a patient give up coverage for life-prolonging therapies and be certified by two physicians as having a life expectancy of six months or less. This is an especially important restriction for nursing home residents, as most die of chronic diseases with variable and unpredictable courses such as heart disease, stroke or dementia, making hospice referrals difficult to time.
Further, for most serious illnesses other than cancer, life prolonging and palliative treatments are often one and the same. Consider diuretic therapy for fluid overload in heart failure. It prolongs life and it palliates by relieving shortness of breath.
Delivery of palliative care in nursing homes
A growing body of evidence from diverse settings (cancer centers, community-based cancer care, hospice) shows that palliative care not only improves the quality of care, and increases patient and family satisfaction, it can also help prolong survival. The proposed drivers of reduced mortality associated with palliative care include reduced iatrogenesis (reduced exposure to harmful medical care such as hospitalizations, which are estimated to be the third leading cause of death in the U.S.), crisis prevention through effective pre-emptive symptom management, and reduced depression (depression is an independent predictor of mortality in every disease in which it co-occurs).
As a side effect of providing better quality care, palliative care also reduces 911 calls, emergency department visits and hospitalizations, resulting in decreased healthcare costs. A 2008 report from my organization, the Center to Advance Palliative Care, showed that up to 80% of nursing home residents could benefit from palliative care.
The dominant models of palliative care delivery in nursing homes take on one or several of three different approaches. The first is engagement of outside palliative care consultants on the request of the nursing home’s medical director, the resident’s attending physician, or the nursing home’s director of nursing. The advantages of this model include that palliative care is available for all nursing home residents, and that it is available without additional costs to the nursing home (palliative care consultants bill Medicare part B fee-for-service). However, it also relies on the variable existence and availability of such outside services.
The second model of delivery is nursing home employment of its own palliative care team and training in palliative care knowledge and skills of its own front-line staff. This is an increasingly popular model with many advantages as daily contact between clinicians and nursing home residents helps to promote care that is based on a keen understanding of the patient’s goals and preferences, as well as timely response to clinical changes. Examples of this model include the Comfort Matters approach developed in Phoenix, AZ and the practices of the Green House and Eden Alternative nursing home models. This model requires resources to invest in staff training and hiring of (scarce) specialist level palliative care professionals.
The third model involves partnerships between hospice agencies and nursing homes in the same communities. This practice has increased rapidly in the last 10 years, and has raised some concerns about use of a benefit meant for the dying for residents with uncertain prognoses who “fail to die on time” and place the hospice at risk of government accusations of fraud and abuse. Studies show that nursing homes with higher hospice penetration tend also to have better palliative care practices (such as access to opioid analgesics) for all residents, whether on hospice or not. This is presumably related to greater staff awareness of techniques for pain and symptom management, as well as addressing emotional and spiritual needs.
Unfortunately, widespread adoption of palliative care faces significant barriers that must be overcome. These include regulatory hurdles created by quality measures for nursing homes – in which the emphasis is on data that proves the nursing home’s ability to rehabilitate residents rather than provide comfort and quality of life for the terminally ill. Meanwhile economic incentives in long-term care reimbursement levels promote frequent hospitalizations. Residents returning from a hospitalization of three days or more are eligible for the more generous Skilled Medicare Benefit. Medicare policies also delay hospice referrals for dying residents, as the Skilled Medicare Benefit pays for a resident’s room and board in the facility, while the Medicare Hospice Benefit does not.
Another significant barrier to adoption of palliative care in nursing homes is the lack of training among all clinicians in addition to inadequate staffing levels in most facilities. Nursing homes are typically under resourced, understaffed and experience high turnover because the work is difficult, poorly paid, lacks a career ladder, and requires demanding paperwork and regulatory compliance. There is also a chronic shortage of staff with any palliative care training, resulting in failures to assess and manage common symptoms such as pain and shortness of breath.
There is little room for argument that the solution to providing higher quality care in nursing homes is greater integration of quality palliative care for a patient population for whom this care should be the standard of practice. Policy and regulatory change and willingness to invest in quality care will be required to make access a reality for our most vulnerable elderly patients.
Diane E. Meier, M.D., FACP, is the director of the Center to Advance Palliative Care. For more information, see www.getpalliativecare.org and www.capc.org.