End of Life Care in the Nursing Home Steven Zweig Family and Community Medicine MU School of Medicine

Epidemiology 1.8 million people live in 17,000 nursing facilities in the US (DHHS 2004), with another 1 million in residential care/assisted living (Golant 2004) 30% of people will die within one year of admission to the nursing home (AHRP 2000) 25% of all US deaths occur in the nursing home; may increase to 40% by 2020 (Teno 2005) 20% of all residents in the nursing home will die each year (Miller 2000) Only 6% in hospice, only 2% admitted on hospice (Parker-Oliver 2003)

Challenges Unpredictable trajectory of illness and unrecognized terminal status Incomplete communication and elucidation of goals of care Conflict between SNF reimbursement and hospice referral – increased pay for rehab vs. end of life care Common discontinuity of providers after nursing home transfer Separation from community/family members Prevalence of lost cognition and physical function leading to depersonalization Low status of nursing home providers Bereavement support for family members/staff rare

Strengths 24 hour care provided Practical experience generated by prevalence of dying in nursing home Ability to partner with hospice Multidisciplinary team in place: nursing, social work, therapies, medicine Opportunities for unique and valuable care models Opportunities for teaching

Unmet Needs Family and nurse caregivers perceive unmet needs for symptom management, personal hygiene, and emotional and spiritual care (Reynolds 2002) Family members want better communication, greater access to physician time, and better pain management (Hanson 1997) Pain is prevalent with affects on ambulation, depression, and quality of life (Teno 2001) Inadequate pain meds, increasing tube feeding (Teno 2004, Shield 2004)

Role of Hospice 76% of all nursing home collaborate with at least one hospice (Miller 2001) 80% of those enrolled in hospice are > 65 years old (Miller 2001) 32% of nursing home residents in hospice stay 14 days or less; 20% one week or less (Miller 2001) 28% of Medicare expenditures in 1999 were assigned to those in the last year of life (CMMS 2005)

Effects of Hospice Decreased hospitalization in last 30 days of life in nursing home setting (Miller 2001) Fewer acute admissions and days in hospital; care rated higher by family members (Casarett 2005) More deaths for those in assisted living if not in hospice (Munn 2006) Hospice improves symptom management, family and family member satisfaction with end of life care (Baer 2000)

Potential Nursing home/Hospice Conflicts Staff may resent intrusion of new caregivers Administrators or medical directors may not be supportive Hospice staff may not be familiar with nursing home policies or regulations Neither staff may appreciate perspectives of the other Incomplete joint care planning results in gaps in care

Processes of Care Usual care Diagnosis Treatment Prognosis Management plan Patient preferences Goals of Care

Four step process for Patient- Centered Care Communicating prognosis Identifying patient preferences Defining goals of care Implementing management plan consistent with those goals (Zweig, Mehr 2003)

Prognosis Death is common in the nursing home Multiple co morbidities create worse prognosis Doctors are hesitant to discuss and tend to overestimate prognosis; 4% of Missouri residents identified as having life expectancy of 6 months or less (Porock 2003) Pneumonia and hip fracture in dementia result in 50% six month prognosis Clinical decision rules may help in prognosis (Porock 2005)

Patient Preferences Cognitively impaired residents Poor completion of advance care directives and naming of health care surrogates Family members and physician are poor at predicting patient preferences DNR orders may serve as surrogate for articulated plan of care

Goals of Care Prioritizing relative emphasis on goals of: –Life prolongation –Preservation of mental and physical functioning –Comfort

Management Plan Should reflect the discussion of prognosis, patient preferences, goals of care Can include DNR orders, limitations on other therapies (e.g. surgery, dialysis, mechanical ventilation, hospitalization, tube feeding, antibiotics) Pathways based on prioritization of goals of care used by Hebrew home in Boston help guide organized care plan

Pathways (1) Intensive pathway. Life prolongation is the prime goal, with maintenance of physical and cognitive function second and maximization of comfort third. This translated into all medically indicated procedures, including cardiopulmonary resuscitation, intubation, and ICU care.

Pathways (2) Comprehensive pathway. Prime goal is maintenance of physical and cognitive function, with prolongation of life second and maximization of comfort third. Attempted CPR would be excluded as would ICU care, because both of these interventions have a low probability of success, and when they do not result in death, commonly result in functional declince.

Pathways (3) Basic pathway. Prime goal is maintenance of physical and cognitive function, with maximization of comfort second and life prolongation third. Nursing home based care for all medical conditions and substitution of medical treatment for surgical treatment whenever possible.

Pathways (4) Palliative pathway. Prime goal is comfort, with maintenance of physical and cognitive function second and life prolongation third. Nursing home based care exclusively, keeping diagnostic tests to a minimum.

Pathways (5) Comfort only. Only goal is comfort. Treatment is exclusively to relieve symptoms, e.g. pneumonia would be treated with oxygen, acetaminophen, and morphine, not antibiotics. –From the Hebrew Rehabilitation Center for Aged, Boston MA. Gullick 1999

What are the domains of care for patients in the nursing home near end of life?

Domains of Care Physical: Were pain and dyspnea assessed and controlled? Interpersonal: Was there access to those people whom the patient wanted to talk with? Psychological: Were those providing care people that the patient was comfortable with? Practical: How adequately were personal care needs met? Spiritual: Did the patient and family members have access to people with whom to talk about life and death? (Fowler 1999)

What are the roles of the Family Physician?

Roles of the Family Physician Commonly are attending physicians, nursing home medical directors, and hospice medical directors Leadership roles in quality improvement Experience in working with multidisciplinary teams May have lost continuity of care May not be interested or skilled in end of life care

What are the opportunities for care enhancement and resident teaching?

Opportunities for Care Enhancement/Teaching Geriatrics, nursing home care, and end of life care are RRC requirements (even if not explicit) Prevalence of longitudinal experiences Predisposed due to role and orientation toward continuity, person centeredness, and experience with doctor/patient/family communication

Opportunities for Care Enhancement/Teaching Communication –Advance care planning –Patient/family discussions regarding goals of care –Development of management plans –Working with nursing home teams –Making hospice referral –Working with hospice team

Opportunities for Care Enhancement/Teaching Assessment –Nursing home visits in continuity –Home and nursing home visits with hospice team –Estimates of prognosis –Evaluations of pain and other symptom management

Opportunities for Care Enhancement/Teaching Management –Symptom management including pain, dyspnea, delirium, anorexia –IDT meetings –Condolence letters, visitation/funeral attendance –Bereavement support –Death reviews –Facility based quality improvement