Bereavement, family & caregiver concerns, and advance care planning

1. Bereavement, family & caregiver concerns, and advance care planning

2. Grief • Relationship of grief to subsequent poor mental and physical health well-documented • Including increased mortality • 9% of adults develop complicated grief reaction • Effective treatment of complicated grief exists, but not a DSM recognized condition Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement Review Article. The Lancet, 370 (9603):1960-1973. 8 December 2007-14 December 2007. Wittouck C, Van Autreve S, De Jaegere E, Portzky G, van Heeringen K. The prevention and treatment of complicated grief: a meta-analysis. Clin Psychol Rev. 2011 Feb;31(1):69-78. Epub 2010 Sep 24.

3. Bereavement care • Hospice the only provider required to provide bereavement services under Medicare, but… • No Medicare reimbursement for hospice bereavement services • Palliative care – bereavement follow-up is a preferred practice, but not required

4. Hospice bereavement services • Highly variable • Little evidence to show what is effective • Average of 2 family members per hospice pt received service (includes phone calls and mailings) in 2009 • 91% of hospices offer bereavement services to community members • Services tend to be for normal grief, not complicated grief

5. Family Caregiving

6. Family Caregiving • More than three in ten U.S. households (31.2%) • estimate of 36.5 million households with a caregiver present • Caregivers predominantly female (66%)

7. Caregiving in the U.S. National Alliance for Caregiving in collaboration with AARP November 2009. http://www.caregiving.org/

8. Impact of caregiving Caregivers report: • emotional stress (31% report stress level 4 or 5 on 5 point scale) • Financial hardship (15% high degree of hardship) • Impact on work 70% of the 73% who worked(change hours, leave of absence)

10. Advance Care PLanning

11. What is advance care planning? . . . • Process of planning for future medical care • Values and goals are explored, documented • Determine proxy decision maker • Professional, legal responsibility

12. . . . What is advance care planning? • Trust building • Uncertainty reduced • Helps to avoid confusion and conflict • Permits peace of mind

13. Advance Care Planning • Based on ethical precept of autonomy • Patient Self-Determination Act (PSDA) – 20 yrs old • Requires facilities to inform pt of right to complete advance directive • 37% of community-dwelling older adults had advanced directives (AD) • 5% to 15% of all community-dwelling adults had AD

14. Advance Directives in Long Term Care & Hospice Users http://www.cdc.gov/nchs/data/databriefs/db54.htm

15. Prevalence of AD • living wills & do not resuscitate orders (DNR) most common • under age 65 years less likely than 85+ • black care recipients less likely than white • age and racial differences larger in home health care and nursing home populations than hospice Jones, Moss, and Harris-Kojetin. Use of Advance Directives in Long-term Care Populations. NCHS Data Brief. Number 54, January 2011. http://www.cdc.gov/nchs/data/databriefs/db54.htm

16. Types of Advance Directives Measured by NCHS: • living will • DNR order • do not hospitalize • feeding restrictions • medical restrictions • organ donation • Autopsy request • Durable power of attorney • Health care proxy/surrogate • Comfort measures

17. Does a document change care? • .6 • Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.6,13 • Advance directives helped make end-of-life decisions in less than half of the cases where a directive existed.6 • Advance directives usually were not applicable until the patient became incapacitated14 and "absolutely, hopelessly ill."2 • Providers and patient surrogates had difficulty knowing when to stop treatment and often waited until the patient had crossed a threshold over to actively dying before the advance directive was invoked.2 • Language in advance directives was usually too nonspecific and general to provide clear instruction.5 • Surrogates named in the advance directive often were not present to make decisions or were too emotionally overwrought to offer guidance.2 • Physicians were only about 65 percent accurate in predicting patient preferences and tended to make errors of undertreatment, even after reviewing the patient's advance directive.15 • Surrogates who were family members tended to make prediction errors of overtreatment, even if they had reviewed or discussed the advance directive with the patient or assisted in its development.16,17 http://www.ahrq.gov/research/endliferia/endria.htm

18. Newer vehicles: • POST (Physician orders for life-sustaining treatment)

19. Policy issues in AD • Education so providers know how to hold productive discussion • EHR – retrieval of AD information across settings • Reimbursement for professional time to develop and update AD