Perspective: Nursing Home Care Paradox—Ensuring Quality of Life, Fostering Dignity in Death

Abstract

I have accrued many case histories, which illustrate poignantly that unless you take the time to engender the trust of the patients and their families, you will not be able to accomplish the goals of a peaceful death in a skilled nursing facility (SNF). This takes patience and the charisma of someone willing to sacrifice time, energy, and-in the case of a fee for service professional-personal income. The rewards are great, but the consequences of failure may be sorrow, reproach, and even litigation. Dr. Michael Brescia said it beautifully recently at a retreat by the Archcare group on End of Life, he said, and I paraphrase, You have to love the patient with your heart, show him or her that love, hold the patient, nurture the family and then and only then will you succeed in this endeavor. With the onslaught of deep cuts in staffing, reimbursement, and nursing home beds across the country, I believe it will only get tougher to carry out this worthy mission, the good nursing home death. This article originates from my experience as a provider of direct medical care to nursing home residents and as medical director of two large skilled nursing facilities for more than 30 years. I've been the director of a 520 bed and then a 729 bed SNF for a combined 25 years. This adds up roughly to 18,000 patient/years and some 5,000 deaths. Too often, I've been witness to deaths that were poorly prepared for and sad. These deaths have been inadequately anticipated, sometimes in an emergency room with the dying person alone because nobody contacted the family; or during an unnecessary hospitalization, and some of these persons have been needlessly symptomatic during the agonal phase because of poor palliative care technique. I chose to include paradox in the title because the emphasis in the past four decades in nursing home reform legislation has (rightly) been to ensure that individuals in such settings are protected from abuse by staff, poor medical care, unnecessary decline, and other related parameters. These protections have been deeply embedded in the state and federal survey methodology, evolving case law, and endless negative press. The paradox comes when we consider that most individuals living in skilled nursing facilities (excluding the expanding subacute population) will end their lives while in residence. Accompanying these deaths may be elements that score the care in a nursing home negatively. Such red flag issues as declining abilities in activities of daily living, inadequate pain management, weight loss, and skin ulcers may obtain during the final journey and if the documentation isn't perfect, will often accrue negative publicity to the home from surveyors or from families or, even costlier, in the courts. This reality presents a naturally occurring disincentive for the SNF to provide the setting for the resident's final journey. Most of us who have practiced medicine in the nursing home setting have experienced frustration and sadness at the circumstances surrounding the demise of our patients. We, the entire care team, often realize too late the essential considerations of prognosis, family dynamics, symptom management, and bereavement. We see, alas, that: * the average nursing home does not meet the responsibility inherent in the reality that so many will die while in residence there, * symptom management is notoriously poor, * hospice referrals remain low, * hospitalizations near the end of life are too frequent, * there continues to be inadequate use of advance care planning, * family dissatisfaction is common, * staff acknowledgement of impending death is highly variable, and * pastoral care is an afterthought. At this point, a few definitions are appropriate. QUALITY OF LIFE Quality of life (QOL) refers to the degree a person is able to function at a usual level of activity without or with minimal compromise of routine activities. …