3 Health Care Debate 2009 RATIONING, DEATH PANELS, AND GRANNY-OH MY! OUR STORY BEGINS IN JULY OF 2009…..
4 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 MedicareVoluntary"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.
5 “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”
6 “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”
7 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 lifeHouse Minority LeaderJohn Boehner
8 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
9 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 GovernorMike Huckabee
10 Newsweek 9/092006 health care expenditures: >$2 trillionPopulation > 65 yo:2006: million2030: 71.5 million30% 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 life78% of last-year-of-life expenses occur in the month before death (primarily secondary to life sustaining care)Rationing 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 tests2050: >1 million people >100 yoWho 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”
11 Questions:Do end of life conversations help or harm patients? What is the evidence?Example: Code status/DNR discussionsCommunication: What works? What doesn’t?Review an 8 step process to discuss code status
13 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 that65% no time-based prognosis discussed1/3 of patients receiving chemotherapy believe its intent is to cure them20% of patients receive chemo in the last 3 weeks of life.Providers less likely to have EOL discussions for patients with non-cancer illnessesMatsuyama J Clin Oncol Hagerty Ann Oncol Ray A J Palliat Med Zhang ASCO Mitchell Supp Care Cancer 2007.
14 Do we do a good job of discussing the future? As a profession – no. Why not?Perceived lack of trainingStressTake away hopeNo time to address emotional needsHarm patients (they’ll give up and die sooner)Hurt our relationship with the patientWhat if we’re wrong? Uncertainty about prognosisIt’s emotionally difficult for usExplicit requests by patient/family not to discussThis is despite strong evidence patients benefit from this and consistent evidence they want to talk about itHancock Palliat Med 2007.Except as mentioned above (not peaceful)
16 Prognosis affects choices about CPR People can make better medical decisions (better = more informed) when they know their prognosis41% of elderly patients would want CPR for an in-hospital cardiac arrestDecreases 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 CPRDecreases to 5% when told prognosis “0-5%” probability of survival to dischargeMurphy et al. NEJM 1994Outpatient geriatric clinic
17 Prognosis affects choices about EOL care Hospitalized cancer patients with prognosis <6 monthsThose who thought prognosis >6 months were much more likely to…Want life-prolonging treatmentsWant ‘aggressive’ treatments (ICU, ventilators)Die on the vent…Than those who thought prognosis was <6months.Survival was the same in both groupsWeeks et al. JAMA 1998.
18 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 cohort71.3% white; 14.8% Black; 11.9% Hispanic; 1.7% Asian and 51.1% maleMedian survival: 4.4 months123/332 (37.0%) reported EOL discussions with MD at baselineSicker patients: lower performance status, higher symptom burden, shorter survival timeNo difference in age, sex, race, religion, education, cancer type, marital status, race/ethnicity, health insurance statusWright et al. JAMA 2008
19 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 disorderWright et al. JAMA 2008
20 Care choices affected by EOL discussions Patients who had discussions about EOL with physiciansMore likely to:Accept diagnosis as terminal (59.2% vs. 28.7%) p<.001Prefer medical treatment focused on relieving pain and discomfort over life extending therapies (52.9% vs. 28.7%) p<.001Complete a DNR order (63.0% vs. 28.5%) p<.001Less likely to:Receive mechanical ventilation (1.6% vs. 11.0%) p=.02Undergo resuscitation effort (0.8% vs. 6.7%) p=.02Be admitted to an intensive care unit (65.5% vs. 44.5%) p=.03Wright et al. JAMA 2008
21 QOL and aggressive care Quality of LifeIn 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 careLonger on hospice, higher reported QOL (6.9 vs. 5.6, p=0.1)Wright et al. JAMA 2008
22 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 patientBetter understanding of “what to expect” as family member diedTeno J et al. JAGS Engel SE et al. JAGS 2006.By future care I mean advanced directives
23 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
24 CWCS: Caregiver Outcomes Better QOL in patients associated withBetter 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 caregiversWright et al. JAMA 2008
25 EOL discussions decrease health care costs CWCS: 188/603 participants (31.2%) reported EOL discussions at baselineno difference in cancer type, recruitment site, treatment preferences, illness acknowledgement, SESQuestion: 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 relationshipControlled for age, sex, educational status, survival time, race/ethnicity, source of reportHigher health care costs do not improve survivalZhang B et al. Arch Intern Med. 2009
26 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
27 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:Copyright restrictions may apply.
28 Outcomes of EOL discussions Patients who have EOL discussions with their doctorsMore likely to:Have an advance directiveUnderstand illness terminalDie at homeHave EOL choices followed (i.e. DNR order in patients who want to be DNR)Choose hospiceImproved QOL for EOL patients (sx relief, MD communication, emotional support, being tx with respect)Decreased Major Depression in bereaved caregiversLess likely to:Have a feeding tubeReferences 1-7See Wright article page 1666 autonomy
29 What do patients want to know? Studied extensively in Western worldMostly cancer – although other diseases representedPatients wantRealistic, truthful informationWhat will happen is as important as timeHow they are told is as important as what they are toldHope, optimism
30 How one is told Loved ones present Adequate time Acknowledgment of emotional, spiritual, existential impact of having a life-limiting disease‘Attitude’ of the clinicianRespect for patient’s emotional stateHagerty Ann Onc Clayton Supp Care CA Curtis J Palliat Med 2008.
31 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 themesEmphasize what can be doneEmotional support, care, dignity, listening, non-abandonmentPractical support (help in home)/Discuss day-to-day livingTruth-telling but ‘not blunt,’ leaving space for the unanticipatedQualitative research
32 Hope & Optimism – What generates hope? The top 4 hope-destroying actions by physiciansAppeared 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
33 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
34 “Most patients…” …means some patients Don’t want to talk about the futureDon’t want straight-forward assessments of prognosisDon’t want to talk about anything ‘negative’Want us to promise them cure, recovery…doesn’t necessary include the patient in front of usFinal part of the talk about talking with patients about prognosis even if they don’t want to
35 What will happen… …Is just as important as time Near universal finding when looked atImpact of illness & its treatment on their livesWhat to expect – treatment and functional coursesTrue in cancer, CHF, COPD, dementiaNear the end…Places of death, impact of death on family, help they can getHagerty et al Ann Oncol Curtis et al. Eur Resp J Curtis et al. Chest Knauft et al. Chest 2005.
36 Can’t I just give him an Advance Directive? Patient Self-Determination Act (PSDA) 1990Requires that all Medicaid and Medicare providers inform adult patients of right to:Participate in and direct their own HC decisionsAccept or refuse treatmentTo prepare an Advance Directive (Living Will, POAHC)Be informed of healthcare facilities policies on these rightsSurrogates stating what they think their family member would want: 50% accurate
37 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 )Teno JM et al. JAGS 2007 (retrospective)Less Life Sustaining Treatment, greater use hospice, less likelihood of terminal hospitalizationFamilies : fewer concerns about physician communication; more aware of “what to expect” with the dying processBUT¼ unmet pain needs½ inadequate emotional support for dying person1/3 inadequate family supportAdvance directives should be the start of a conversation, not the end…..
38 Discussions About Code Status “DO YOU WANT US TO DO EVERYTHING?”
39 Case 1: RFA 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 twoMedicine 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.”
40 CPR- How effective is it? Inpatient setting:40% survive the CPR effort1/3 survive to leave the hospital (i.e. 14% of total)So 86% of patients who code in hospital die in the hospitalMore successful if CPR is in OR, ICU, Cath labDepending on study, 7-26% survive a CPR effortOther studies have put this at 7-26%MH Ebell et al. J Gen Intern Med (Meta-analysis); Tresch D et al. JAGS 1994; Warner SC and Sharma TK. Resuscitation 1994.
41 CPR-How effective is it? Low likelihood of survival if:Sepsis1/73; 0/42 survived CPR effortMetastatic cancer0-14% survived CPR effortRenal failureNeed for vasopressors or inotropes2/55 survived CPR effort (both had reversible conditions, i.e. AMI, arrythmia)Nursing home residents0-1.7% survive CPR effortAge alone not a RFReferences 30-38, 41
42 Outcome of CPR in the ICU Setting 114 MICU patients underwent CPRMean age 5925% malignancy, 18% vascular disease, 7% chronic liver disease, 5% ESRD, 5% COPD: 34% sepsis, 20% PNA33% had been housebound or bedridden prior to admission44% survived initial effort, but…Only 31% with CPR effort survived >24 hours, and….1/29 malignancy; 1/39 sepsis survived effortOnly 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 yearPatients 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
43 Problems that arise in DNR discussions Expecting patients to make decisions without adequate information (i.e. un-informed consent)DiagnosisTreatment optionsPrognosisCPR discussions MUST be framed in terms of the overall goals of care and care plan, not in isolationWeigh benefit/burden of each treatment optionCan we do it? Should we do it?
44 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?”
45 Barriers to patients accepting DNR DNR only refers to this medical interventionMany patients and families fear thatDNR=“No Care”Unfortunately, medical teams often reinforce this fear:We can’t take him to the ICU if he’s DNRHe can’t get antibiotics if he’s DNRWe think the best thing is to “withdraw care”
46 Steps for Discussion of CPR Quiet setting; clarify goals for the meetingDetermine decisionality- make sure right people are at meeting (team/decision maker)Clarify in your mind beforehand what is best medical careWho 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?”
47 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?”
48 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 discussionThese discussions are often a process….
49 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.
50 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.”
51 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?
52 CommunicationRemember it often takes several discussions; people are processing tough information; give people time (if possible) and spaceRespond to affect with affectI 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 discussionTo patient, this is an out-of-control situation. Try and give back as much control as possible
53 CommunicationIf you take something “off the table”, put something back on:Symptom controlFamily supportHospice careOtherReassure 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”
54 Does the order make sense? Don’t let the sun set on a code status order that makes no senseOnly cardioversion (in a patient who will die a respiratory death)Only one shock, then stopOnly for 5 minutes, then stopChest compressions without cardioversion“He wants intubation, but he doesn’t want to be on a ventilator…”
55 SummaryEOL discussions can benefit patients and families in real ways; do not cause harmMay take a series of discussions…EOL counseling should optimally start before a crisisEOL discussions can help ensure patient autonomy, not take it awayCommunication skills training is needed to help cliniciansMajor education focus of Palliative Medicine team: medicine residents; oncology, geriatric and pain fellows.Better communication skills=less anxiety for HCP’s?
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61 References39. Grigoriyan A et al. Outcomes of cardiopulmonary resuscitation for patients on vasopressors or inotropes: A pilot study. J Critical Care 2009;24:Hwang J et al. Survival in cancer patients after out-of-hospital cardiac arrest. Support Care Cancer 2009;epubEhlenbach WJ et al. Epidemiologic Study of In-Hospital Cardiopulmonary Resuscitation in the Elderly. NEJM 2009;361(1):22-3142.Tresch D et al. Cardiopulmonary resuscitation in elderly patients hospitalized in the 1990’s: a favorable outcome. J Am Geriatr Soc 1994;42:43. Warner SC, Sharma TK. Outcome of cardiopulmonary resuscitation and predictors of resuscitation status in an urban community teaching hospital. Resuscitation 1994;27:13-21.