Communication in End of Life Care: What’s New? LISA MARR, MD Section Chief, Palliative Care Department of Internal Medicine University of New Mexico LMARR@SALUD.UNM.EDU

Disclosure No conflicts of interest to disclose

Health Care Debate 2009 RATIONING, DEATH PANELS, AND GRANNY-OH MY! OUR STORY BEGINS IN JULY OF 2009…..

Health Care Bill (HR 3200): 7/09 “Advance Care Planning Consultation”: A senior and a medical practitioner (MD, PA, NP) discussing “advance care planning, if…the individual involved has not had such a consultation within the last 5 years.” Reimbursement by Medicare Voluntary "There has been a lot of misinformation about the advance-care planning provisions in the bill," AMA President J. James Rohack, MD, said in a statement. "Simply put, the bill would create a new Medicare benefit to pay physicians for time spent on advance-care planning consultations with seniors. It would be completely voluntary, and it will allow patients, if they wish, to discuss a broad range of issues, including hospice, living wills, advance directives and appropriate pain care. "These are important discussions everyone should have so they are fully informed and can make their wishes known. That's not controversial, it's plain, old-fashioned patient-centered care." Under the legislation, physicians could bill Medicare for advance-care planning consultations once every five years or when the patient's health conditions change dramatically. In states that have standardized life-sustaining treatment order forms, doctors could counsel patients about their choices and complete that documentation. The bill also calls for consensus standards on how to measure the quality of doctors' and hospitals' performances in carrying out patients' end-of-life care wishes.

“Advance Care Planning Consultation”, p. 425 Explanation by the practitioner of “…advance care planning, including key questions and considerations, important steps, and suggested people to talk to” “…advance directives, including living wills and durable powers of attorney, and their uses” “…the role and responsibilities of a health care proxy”

“Advance Care Planning Consultation”, p. 425 Explanation by the practitioner of “…the continuum of end-of-life services and supports available, including palliative care and hospice, and benefits for such services and supports that are available under this title” “…orders regarding life sustaining treatment or similar orders.” “Provide a list of national and State-specific resources to assist consumers and their families with advance care planning”

Euthanasia? 7/09 “This provision might start us down a treacherous path toward government-encouraged euthanasia if enacted into law.” Euthanasia of course being administration of a lethal dose of medication with the intent of ending someone’s life House Minority Leader John Boehner

Former Alaska Governor Sarah Palin Death Panels? 8/09 “And who will suffer the most when they ration care? The sick, the elderly, and the disabled, of course. The America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil.” Former Alaska Governor Sarah Palin

Former Arkansas Governor Rationing care? 8/09 “[I]t was President Obama himself who suggested that seniors who don’t have as long to live might want to consider just taking a pain pill instead of getting an expensive operation to cure them,” said Huckabee. Under President Obama's health care plan, (Ted) Kennedy would have been told to go home to take pain pills and die" during his last year of life, rather than… freely d(oing) what most of us would do. He chose an expensive operation and painful follow up treatments.” Former Arkansas Governor Mike Huckabee

Newsweek 9/09 2006 health care expenditures: >$2 trillion Population > 65 yo: 2006: 37.3 million 2030: 71.5 million 30% of Medicare funds each year are spent on terminal care for 5% of the program's patients. Nearly all Medicare beneficiaries spend some time in hospital in last year of life 78% of last-year-of-life expenses occur in the month before death (primarily secondary to life sustaining care) Rationing- 1962 Dialysis “God Squads”; 2009: Insurance, Transplant Committees, No money/No Care, Non-citizens, Clinical Trials, Oregon Health Plan, etc. Health care costs have grown greater than 50% in last decade; doctors get paid more by Medicare and Medicaid if they run more tests, do more procedures (fee for service); fear of lawsuits makes people run more tests 2050: >1 million people >100 yo Who will get the first H1N1 vaccine? But physicians said the controversy shows that despite decades of focus on helping patients choose what -- if any -- interventions they want as they die, end-of-life care remains a political and ethical tripwire. “Americans want the best, they want the latest, and they want it now”

Questions: Do end of life conversations help or harm patients? What is the evidence? Example: Code status/DNR discussions Communication: What works? What doesn’t? Review an 8 step process to discuss code status

Setting the Stage Why discuss the future?

Do patients want to discuss EOL care? <50% patients who want to have EOL care discussions with physicians do so (cancer and non-cancer) Advanced Cancer: 25% of patients with incurable cancer aren’t told that 65% no time-based prognosis discussed 1/3 of patients receiving chemotherapy believe its intent is to cure them 20% of patients receive chemo in the last 3 weeks of life. Providers less likely to have EOL discussions for patients with non-cancer illnesses Matsuyama J Clin Oncol 2006. Hagerty Ann Oncol 2005. Ray A J Palliat Med 2006. Zhang ASCO 2008. Mitchell Supp Care Cancer 2007.

Do we do a good job of discussing the future? As a profession – no. Why not? Perceived lack of training Stress Take away hope No time to address emotional needs Harm patients (they’ll give up and die sooner) Hurt our relationship with the patient What if we’re wrong? Uncertainty about prognosis It’s emotionally difficult for us Explicit requests by patient/family not to discuss This is despite strong evidence patients benefit from this and consistent evidence they want to talk about it Hancock Palliat Med 2007. Except as mentioned above (not peaceful)

Elephant in the Room

Prognosis affects choices about CPR People can make better medical decisions (better = more informed) when they know their prognosis 41% of elderly patients would want CPR for an in-hospital cardiac arrest Decreases to 22% when told their probability of survival to discharge was “10-17%” 11% with a chronic/terminal illness (life-expectancy <1 year) would want CPR Decreases to 5% when told prognosis “0-5%” probability of survival to discharge Murphy et al. NEJM 1994 Outpatient geriatric clinic

Prognosis affects choices about EOL care Hospitalized cancer patients with prognosis <6 months Those who thought prognosis >6 months were much more likely to… Want life-prolonging treatments Want ‘aggressive’ treatments (ICU, ventilators) Die on the vent …Than those who thought prognosis was <6months. Survival was the same in both groups Weeks et al. JAMA 1998.

Coping With Cancer Study (CWCS) 332 patients with metastatic cancer and progression through 1st-line chemo and their caregivers (dyads) NCI/NIMH funded, multisite, prospective cohort 71.3% white; 14.8% Black; 11.9% Hispanic; 1.7% Asian and 51.1% male Median survival: 4.4 months 123/332 (37.0%) reported EOL discussions with MD at baseline Sicker patients: lower performance status, higher symptom burden, shorter survival time No difference in age, sex, race, religion, education, cancer type, marital status, race/ethnicity, health insurance status Wright et al. JAMA 2008

Do EOL conversations cause emotional harm? CWCS: Discussions about EOL were NOT associated with feeling: “Depressed”, “sad”, “terrified”, “worried” or meeting DSM criteria for mental disorder Wright et al. JAMA 2008

Care choices affected by EOL discussions Patients who had discussions about EOL with physicians More likely to: Accept diagnosis as terminal (59.2% vs. 28.7%) p<.001 Prefer medical treatment focused on relieving pain and discomfort over life extending therapies (52.9% vs. 28.7%) p<.001 Complete a DNR order (63.0% vs. 28.5%) p<.001 Less likely to: Receive mechanical ventilation (1.6% vs. 11.0%) p=.02 Undergo resuscitation effort (0.8% vs. 6.7%) p=.02 Be admitted to an intensive care unit (65.5% vs. 44.5%) p=.03 Wright et al. JAMA 2008

QOL and aggressive care Quality of Life In final week of life, QOL decreased with increasing number of aggressive interventions (even after adjustment for severity of illness) (6.4 vs. 4.6, p=0.1) In final weeks of life, QOL increased with hospice care Longer on hospice, higher reported QOL (6.9 vs. 5.6, p=0.1) Wright et al. JAMA 2008

Do conversations about EOL harm families? No! If physicians discussed EOL options/the future with patients, bereaved families reported: Higher satisfaction with communication from physician, comfort of patient Better understanding of “what to expect” as family member died Teno J et al. JAGS 2007. Engel SE et al. JAGS 2006. By future care I mean advanced directives

CWCS: Caregiver Outcomes Caregivers of patients who received aggressive care in last week of life were more likely to: Develop Major Depressive Disorder (OR 3.37) Experience regret (p=.01) Feel unprepared for patient’s death (p<.001) Have poorer overall QOL (p=.004) Have poorer self reported health (p=.04) Wright et al. JAMA 2008

CWCS: Caregiver Outcomes Better QOL in patients associated with Better overall QOL (p=.001) Self reported health (p=.004) Physical functioning (p=.02) Mental health (p=.04) Felling better prepared for the death (p=.002) Less regret (p<.001) In caregivers at 6 month follow-up “Cascading benefits” for patients and caregivers Wright et al. JAMA 2008

EOL discussions decrease health care costs CWCS: 188/603 participants (31.2%) reported EOL discussions at baseline no difference in cancer type, recruitment site, treatment preferences, illness acknowledgement, SES Question: Do end of life conversations result in cost savings (aggregate costs)? Did not have discussion: $2917 ($285/day) Had discussion: $1876 ($177/day) Can’t say a causal relationship Controlled for age, sex, educational status, survival time, race/ethnicity, source of report Higher health care costs do not improve survival Zhang B et al. Arch Intern Med. 2009

EOL discussions decrease health care costs EOL discussion reduced cost by 35.7% (less use intensive interventions) Higher medical costs associated with worse physical distress (p=.003), worse overall QOL per caregiver (p=.006) Survival was the same in both groups….. Zhang B et al. Arch Intern Med. 2009

Association between cost and quality of death in the final week of life (adjusted P = .006) Zhang, B. et al. Arch Intern Med 2009;169:480-488. Copyright restrictions may apply.

Outcomes of EOL discussions Patients who have EOL discussions with their doctors More likely to: Have an advance directive Understand illness terminal Die at home Have EOL choices followed (i.e. DNR order in patients who want to be DNR) Choose hospice Improved QOL for EOL patients (sx relief, MD communication, emotional support, being tx with respect) Decreased Major Depression in bereaved caregivers Less likely to: Have a feeding tube References 1-7 See Wright article page 1666 autonomy

What do patients want to know? Studied extensively in Western world Mostly cancer – although other diseases represented Patients want Realistic, truthful information What will happen is as important as time How they are told is as important as what they are told Hope, optimism

How one is told Loved ones present Adequate time Acknowledgment of emotional, spiritual, existential impact of having a life-limiting disease ‘Attitude’ of the clinician Respect for patient’s emotional state Hagerty Ann Onc 2005. Clayton Supp Care CA 2005. Curtis J Palliat Med 2008.

Hope and Optimism Qualitative research: Clayton Cancer 2005: Explored with advanced cancer patients n=19 (& caregivers) how can clinicians can foster hope when they talk about future. Major themes Emphasize what can be done Emotional support, care, dignity, listening, non-abandonment Practical support (help in home)/Discuss day-to-day living Truth-telling but ‘not blunt,’ leaving space for the unanticipated Qualitative research

Hope & Optimism – What generates hope? The top 4 hope-destroying actions by physicians Appeared nervous or uncomfortable “Gave my prognosis to my family, then gradually told me” Used euphemisms “Avoided talking about the cancer and only discussed treatment” Hagerty J Clin Oncol 2005

Hope & Optimism “Hope” = a sense of receiving good care…“best” care – all the right things are being done, non-abandonment, confidence and warmth with the physician, completeness of information, And NOT being told unambiguously “There is no hope of recovery” These themes far out-shadow the way preserving hope is often conceived: half-truths, concealing information, only positives

“Most patients…” …means some patients Don’t want to talk about the future Don’t want straight-forward assessments of prognosis Don’t want to talk about anything ‘negative’ Want us to promise them cure, recovery …doesn’t necessary include the patient in front of us Final part of the talk about talking with patients about prognosis even if they don’t want to

What will happen… …Is just as important as time Near universal finding when looked at Impact of illness & its treatment on their lives What to expect – treatment and functional courses True in cancer, CHF, COPD, dementia Near the end… Places of death, impact of death on family, help they can get Hagerty et al Ann Oncol 2005. Curtis et al. Eur Resp J 2004. Curtis et al. Chest 2002. Knauft et al. Chest 2005.

Can’t I just give him an Advance Directive? Patient Self-Determination Act (PSDA) 1990 Requires that all Medicaid and Medicare providers inform adult patients of right to: Participate in and direct their own HC decisions Accept or refuse treatment To prepare an Advance Directive (Living Will, POAHC) Be informed of healthcare facilities policies on these rights Surrogates stating what they think their family member would want: 50% accurate

Can’t I just give him an Advance Directive? Mixed results: Hospital LOS, place of death (home vs. hospital), costs of hospital stay, medical treatments not affected by AD (ref. 19-27) Teno JM et al. JAGS 2007 (retrospective) Less Life Sustaining Treatment, greater use hospice, less likelihood of terminal hospitalization Families : fewer concerns about physician communication; more aware of “what to expect” with the dying process BUT ¼ unmet pain needs ½ inadequate emotional support for dying person 1/3 inadequate family support Advance directives should be the start of a conversation, not the end…..

Discussions About Code Status “DO YOU WANT US TO DO EVERYTHING?”

Case 1: RF A 68 yo man is newly diagnosed with metastatic hepatocellular cancer, alcohol related liver failure, and impending kidney failure. Because of his poor functional status (ECOG 3-4) and organ failure, he is not a candidate for chemotherapy. The oncologist told him this. Prognosis: days to a week or two Medicine Team: “He seems to have unrealistic expectations. I asked him “Do you want us to do everything? and he said “Yes”. So he’s a full code.”

CPR- How effective is it? Inpatient setting: 40% survive the CPR effort 1/3 survive to leave the hospital (i.e. 14% of total) So 86% of patients who code in hospital die in the hospital More successful if CPR is in OR, ICU, Cath lab Depending on study, 7-26% survive a CPR effort Other studies have put this at 7-26% MH Ebell et al. J Gen Intern Med. 1998 (Meta-analysis); Tresch D et al. JAGS 1994; Warner SC and Sharma TK. Resuscitation 1994.

CPR-How effective is it? Low likelihood of survival if: Sepsis 1/73; 0/42 survived CPR effort Metastatic cancer 0-14% survived CPR effort Renal failure Need for vasopressors or inotropes 2/55 survived CPR effort (both had reversible conditions, i.e. AMI, arrythmia) Nursing home residents 0-1.7% survive CPR effort Age alone not a RF References 30-38, 41

Outcome of CPR in the ICU Setting 114 MICU patients underwent CPR Mean age 59 25% malignancy, 18% vascular disease, 7% chronic liver disease, 5% ESRD, 5% COPD: 34% sepsis, 20% PNA 33% had been housebound or bedridden prior to admission 44% survived initial effort, but… Only 31% with CPR effort survived >24 hours, and…. 1/29 malignancy; 1/39 sepsis survived effort Only 5% survived to discharge. 6 patients survived to hospital D/C (5% patients) 4/6 died in one year; 2 had severe disabilities and were alive at 1 year Patients with chronic medical conditions undergoing CPR even in an ICU setting seldom survive to discharge… (retrospective study) FJ Landry et al. Arch Intern Med 1992

Problems that arise in DNR discussions Expecting patients to make decisions without adequate information (i.e. un-informed consent) Diagnosis Treatment options Prognosis CPR discussions MUST be framed in terms of the overall goals of care and care plan, not in isolation Weigh benefit/burden of each treatment option Can we do it? Should we do it?

Communication Common phrases: “What would you like us to do if your heart stops?” “Do you want us to restart your heart if it stops?” “Do you want us to do everything?” “You don’t want us to break your ribs, and shove a tube down your throat, and hook you to a breathing machine, do you?”

Barriers to patients accepting DNR DNR only refers to this medical intervention Many patients and families fear that DNR=“No Care” Unfortunately, medical teams often reinforce this fear: We can’t take him to the ICU if he’s DNR He can’t get antibiotics if he’s DNR We think the best thing is to “withdraw care”

Steps for Discussion of CPR Quiet setting; clarify goals for the meeting Determine decisionality- make sure right people are at meeting (team/decision maker) Clarify in your mind beforehand what is best medical care Who is this person? “Tell me about your Dad. I have all the medical information, but want to know more about him as a person. Can you tell me a little about him, and how things were going before he came into the hospital?”

Steps for Discussion of CPR Ask patient/family what they know about medical condition- make no assumptions! Present medical information; clarify misunderstandings “Have you ever thought about what your wishes would be if you were ever in this situation?” or “ Has your father ever talked about what would be most important to him if he was ever in this situation?”

Helpful Communication Phrases Make recommendation in terms of overall plan of care “Given that your cancer is growing and not responding to chemotherapy, I think the best plan would be that we don’t use any more chemotherapy.” “Your father is very sick. His heart, liver and kidneys are failing, despite our best medical efforts. He is dying.” Judge whether the time is right to talk about CPR, or whether this would best be left to another discussion These discussions are often a process….

Helpful Communication Phrases if Team Believes DNR is Not Appropriate I want to talk about something that’s hard to discuss. When someone’s heart and breathing stop, in other words when they die, we have a lot of things we can do to attempt to try and reverse this. This is called cardiopulmonary resuscitation, or CPR. In patients who are very sick as you are, CPR has a low likelihood of working. In other words, patients rarely survive the CPR effort, and if they do, it’s extremely rare to make it out of the hospital.

Helpful Communication Phrases CPR may just prolong the dying process, cause suffering and not bridge you to getting better, because it doesn’t fix the cancer (or whatever underlying process is present). I would recommend that we protect you from CPR, which will only harm you and not offer benefit, and not do this when that time comes. This is what’s called “Do Not Resuscitate.”

Helpful Communication Phrases Instead, I would recommend that we make sure you are comfortable, as pain free as possible, and well cared for as you are dying. What are your thoughts about this?

Communication Remember it often takes several discussions; people are processing tough information; give people time (if possible) and space Respond to affect with affect I can see this is hard for you to hear (reflect on emotion in the room). Silence: Can you tell me what your thoughts are? Have you thought about this before? Allow silence; let patient determine tempo of discussion To patient, this is an out-of-control situation. Try and give back as much control as possible

Communication If you take something “off the table”, put something back on: Symptom control Family support Hospice care Other Reassure non-abandonment “Even though we can’t fix the illness, there is a lot we can do to help you and your family in this time. I want to hear what is most important to you and your family”

Does the order make sense? Don’t let the sun set on a code status order that makes no sense Only cardioversion (in a patient who will die a respiratory death) Only one shock, then stop Only for 5 minutes, then stop Chest compressions without cardioversion “He wants intubation, but he doesn’t want to be on a ventilator…”

Summary EOL discussions can benefit patients and families in real ways; do not cause harm May take a series of discussions… EOL counseling should optimally start before a crisis EOL discussions can help ensure patient autonomy, not take it away Communication skills training is needed to help clinicians Major education focus of Palliative Medicine team: medicine residents; oncology, geriatric and pain fellows. Better communication skills=less anxiety for HCP’s?

References Hofmann JC et al. Patient preferences for communication with physicians about end-of-life decisions. Ann Intern Med 1997;127(1):1-12. Teno JM et al. Family perspectives on end of life care at the last place of care. JAMA 2004;291(1):88-93. Reilly BM et al. Can we talk? Inpatient discussions about advance directives in a community hospital. Attending physicians' attitudes, their inpatients' wishes, and reported experience. Arch Intern Med. 1994;154:2299-308. Haas JS et al. Discussion of preferences for life-sustaining care by persons with AIDS. Predictors of failure in patient-physician communication. Arch Intern Med. 1993;153:1241-8. Shmerling RH et al. Discussing cardiopulmonary resuscitation: a study of elderly outpatients. J Gen Intern Med. 1988;3:317-21. Frankl D, Oye RK, Bellamy PE. Attitudes of hospitalized patients toward life support: a survey of 200 medical inpatients. Am J Med. 1989;86(6 pt 1): 645-8. 7. Teno JM et al. Association between advance directives and quality of end-of-life care: a national study. JAGS 2007; 55:189-94. 8. Engel SE et al. Satisfaction with end-of-life care for nursing home residents with advanced dementia. JAGS 2006; 54:1567-72

References 9. Zhang B et al. Health Care Costs in the Last Week of Life: Associations With End-of-Life Conversations. Arch Intern Med. 2009;169(5):480-488. 10. Wright AA et al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA 2009;8(300):1665-1673. 11. Weeks JC et al. Relationship Between Cancer Patients’ Predictions of Prognosis and Their Treatment Preferences. JAMA 1998;279(21):1709-1714. 12. Hanchate A et al. Racial and Ethnic Differences in End-of-Life Costs: Why Do Minorities Cost More Than Whites? Arch Intern Med 2009;169(30): 493-501 13. Phelps AC et al. Religious Coping and Use of Intensive Life-Prolonging Care Near Death in Patients With Advanced Cancer. JAMA 2009;301(11):1140-1147

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References 22. Weeks WB, Kofoed LL, Wallace AE et al. Advance directives and the cost of terminal hospitalization. Arch Intern Med 1994;154:2077–2083. 23. Chambers CV, Diamond JJ, Perkel RL et al. Relationship of advance directives to hospital charges in a Medicare population. Arch Intern Med 1994;154:541–547. 24. Molloy DW, Guyatt GH, Russo R et al. Systematic implementation of anadvance directive program in nursing homes: A randomized controlled trial. JAMA 2000;283:1437–1444. 25. Degenholtz HB, Rhee Y, Arnold RM. Brief communication: The relationship between having a living will and dying in place. Ann Intern Med 2004;141:113–117. 26. Teno JM, Lynn J, Phillips RS et al. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. J Clin Ethics 1994;5:23–30. 27. Teno JM, Lynn J, Connors AF Jr et al. The illusion of end-of-life resource savings with advance directives. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J AmGeriatr Soc 1997;45:513–518. 28. Hancock K et al. Truth-telling in discussing prognosis in advanced life-limiting illnesses: a systematic review. Palliat Med. 2007; 21:507-517. 29. Mark H Ebell, Lorne A Becker, Henry C Barry, and Michael Hagen. Survival After In-House Cardiopulmonary Resuscitation: A Meta-Analysis. J Gen Intern Med. 1998 December; 13(12): 805–816.

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References 39. Grigoriyan A et al. Outcomes of cardiopulmonary resuscitation for patients on vasopressors or inotropes: A pilot study. J Critical Care 2009;24:415-418. Hwang J et al. Survival in cancer patients after out-of-hospital cardiac arrest. Support Care Cancer 2009;epub Ehlenbach WJ et al. Epidemiologic Study of In-Hospital Cardiopulmonary Resuscitation in the Elderly. NEJM 2009;361(1):22-31 42.Tresch D et al. Cardiopulmonary resuscitation in elderly patients hospitalized in the 1990’s: a favorable outcome. J Am Geriatr Soc 1994;42:137-141. 43. Warner SC, Sharma TK. Outcome of cardiopulmonary resuscitation and predictors of resuscitation status in an urban community teaching hospital. Resuscitation 1994;27:13-21.

Thank you! Questions?