Maryland La w Revie w 2012 The Futility o f Futility

1. Maryland Law Review2012 The Futility of Futility

2. BANEC Commentary1999 Ø“Why futility policiesare not the answer” lDiscussesBANEC guidelinesand concerned that it keeps the existingimbalanceof power between physiciansand patients. Ø“Respect for patientsshould dominatehealth care decisions” lSupports BANEC guidelines“as an importantaddition to the growing number of community policies”

3. Procon.org

4. TADA 1999 ØEnacted in 1999 lStill controversial…

5. TADA Commentary2009

6. Notdeadyet? 2013

7. A growingresistance? April 2014

8. UCLA2008 WITHDRAWINGOR WITHHOLDINGMEDICALLY INAPPROPRIATELIFESUSTAINING TREATMENT ØDefined l UCLA Healthcarealso supports the principle that health care providers are not required to offer or continue to provide any medical treatment that is medically ineffectiveor contrary to generally accepted health care standards referred to in thisPolicy as “medically inappropriate treatment”) as described in Californialaw: l Examples provided: The following are examples of medically inappropriatetreatment: a). Medical treatmentthat serves only to maintain survival in an intensivecare unit without the reasonable possibilityprolonging life in a non-comatosestate; or b). Medical treatment without the reasonable possibilityof clinical improvementto live outside of an intensivecare unit. Inappropriatemedical treatment may cause undue suffering, loss of dignity, or unnecessarypain for the patient.Thismeans that some patients will not be offered treatmentthat theymight want, even if previouslyspecified ØClear responsibilitiesfor physician,nurse, and social worker or chaplain ØClearly defines unique criteria for infants(<1 year old) Ø“Reasonable” effortsfor transfer and reasonabletimefor court

9. Stanford 2009 Medically Ineffective(Futile) Treatment ØDefined? ØRequiresethicsconsult ØRequiresattendingphysiciandocumenting clinical rationale ØReasonabletime-limitedopportunity ØPhysician and/orhospitalto assistin the transfer lUnless patient/surrogaterefuses assistance

10. KP Socal Experience • ØBackground: In 2007 adaptedpartsof the VA integratedethicsmodel • lStarted processfor hiring medical bioethicsdirectors at each SoCal KP Facility • lQuicklythere was a request to consider developing our own nonbeneficialtreatment policy. • In general physicianmembers desired to wait on developing a policy • l Concerned about appearance of conflict of interest • l Importance of having a wider community standard was emphasized • l Recommendedto wait until a CMA statewide model policy was completed. • In general bioethicsdirectorsdesired to develop a policy • l To ensure a standardized process would be available to patients and staff regardless of which KP facilitya member might be admitted. • l Reasonable to wait until the CMA completed a model policy

11. KP Southbay 2009 ØApproved a local nonbeneficialtreatment policy in 2009 based on a ‘fair and explicit’process. ØGoal was to “create ‘moral space’ for patients,families, and the treatmentteam by nurturingshared decision making…” l Policy relied on quality conversations ØQualitativeretrospective evaluationof consults from November2009 to August 2012 l 146 cases had treatment level conflict, in 92 of the cases the process outlined in the policy was invoked. l After 1stmeeting 70 cases had resolution (22 left) – second opinion then obtained l After 2ndmeeting 9 cases had resolution (13 left) – formal ethics consultation then obtained l After 3rdmeeting 8 cases had resolution (5 left) – Unilateral decision thenmade.

12. KP SoCal DevelopmentProcess ØSubcommittee on Policy Suggestion(SOPS) convened afterCMA publishedtheirmodel policy. SOPS then developedand finalizeda draftpolicy modeled afterthe CMA policy. l Discussedand reviewed for many months ØForwardedto entireregional bioethicscommittee l Discussedfor another year (or two). ØForwardedfinalversion to multiple KP stakeholder groups for review ØAdopted late 2013 as a regional policy. ØSent to local hospitalsfor individualfacility adoption l In process…

13. KP SoCal Policy Overview ØCoversboth nonbeneficialtreatment or contrary to generallyacceptedmedical standards. ØDesignedto encouragecommunication Ø5 definitionsfor non-beneficialtreatment l Ineffectivefor producing the physiologicaleffectdesired l Cannot be experiencedby the patient as furtheringtheir expressedand medically obtainablegoals. l Harm > Benefit l No realistic chance of returning the patient to a level of health that permitssurvival outside of a general acute care hospital. l Permanently unconsciousunless there is evidence that the patient would value remaining alive in that state.

14. KP SoCal Policy Procedure ØStep 1 – Identify non-beneficialtreatment(any medical teammember can feel it is in their professional judgment). l Consider ethics consultation early in the process l Notifyattendingphysicianthat makes the determinationand should facilitateconsensus and understandingamong the team members (implies care conference among the medical team1st) l Familymtg #1 is held and documented.Any non life-sustaining interventionscan be stopped or not offeredat this point while awaiting furthersteps. ØStep 2 – Offer 2nd opinion from anotherKFH physician with needed expertise.Should be documented. l If foundto be ‘not non-beneficial’this physicianshould be willing to assume care or should be transferredto another physicianor facility l Else Familymtg #2 is held with attending.

15. KP SoCal Policy Procedure • ØStep 3 – Ethics consultation for formalEthics Review • l At least 3 members, at least one physicianand one non- physician • l Documentationin the medical record with recommendation based on the ethical values and moral factors directlyrelated to the non-beneficialtreatment being discussed. • l If supports continuing of the previouslyidentifiednon-beneficial treatmentthenthe ethics review should identifythe medical team that is willing to provide the treatment within a reasonabletime period. • l If does not support continued non-beneficialtreatment(i.e. agrees with the initial physiciansdeterminations)then patient/ surrogate informedand if desired transfer attemptsshould be made. • Attending physician to use clinical judgment whether to continue non- beneficial treatments already initiated. • If not transferableor not desired appropriate time provided to allow familyto gather at the bedside.

16. KP SoCal Policy DraftFlowchart

17. Patients who make wrongchoices Robert Macauley, MD Ø “palliative care espouses goals beyond that of respect for autonomy, goals that may appear at first glance to be universally held and thus uncontentious.For example, ‘‘The goal of palliative care is to prevent and relieve suffering”” Ø “Yet in reality there are situations where patients or families opt for treatment plans whose burdens outweigh the benefits. Somewhere between choices that are understandable though not recommended, and thosethat are clearly futile, lie informed decisions that are overwhelmingly inadvisable.” Ø “Such a patient presents the clinician with an impossible choice: either respect the patient’s wishes, or minimize suffering. This dilemma brings to mind the opening stanza of Dylan Thomas’s famous poem: ‘Do not go gentle into that good night, Old age should burn and rage at close of day; Rage, rage against the dying of the light.’ Which, in turn, prompts the question: Weremore antipalliativecare words ever written?” Ø “Factual clarification and working with patient and familyto achieve consensus may resolve this dilemma. Nevertheless,it is critical to note that implicit within this approach is the assumption that if such patients really understood what they were requesting, they wouldn’t request it.” … “Often, however, the basis of the patient’s choice is more emotional thancognitive” Ø Palliativecare biases? “four areas where we have reached firm,yet ultimately questionable, conclusions: l 1. Patients should be comfortable with (or at least conversant in) death, just as we are. l 2. We pride ourselves on being persuasive communicators. l 3. We recognize the impact of suffering, and know what to do about it. l 4. We like to believe that our assumptions are universally held, and thus don’t constitute biases.” Ø “perhaps the most we can do is share with the patient that it is difficult for us, too. Done in a sensitive fashion,this will ensure theyknow how much we care for them, even if they did not find our recommendations compelling.They’ll also know we’re ready to help them, if they decide to let us. In the end, we will have given the patient permission to be trueto themselves(and theirvery un-palliative philosophy of life).”

18. DiscussingTreatmentPreferences With Patients Who Want “Everything” • TimothyE. Quill,MD; Robert Arnold, MD; and Anthony L. Back, MD • ØStep 1 – Understandwhat “doing everything”means to the patient • l Everything to prolong life even if only a small chance regardless of suffering? • l Everything that has a reasonablechance of prolonging life even if increasessuffering • l Everything that has a reasonablechance of prolonging life, but not if would increasesuffering • l Everything that might provide maximum relief of suffering, even if it might unintentionallyshorten life • l Underlyingmeanings? • Don’t give up on me. I’m scared of dying. I don’t want to leave my family. • Do everything you think is worthwhile doctor. Don’t leave any stone unturned. • I value every moment of life regardless of suffering (Does your faith provide any guidance in thesematters?). • I will leave my fate in God’s hands / I’m hoping for a miracle (How might we know when God thinks it is your time?)

19. DiscussingTreatmentPreferences With Patients Who Want “Everything” TimothyE. Quill,MD; Robert Arnold, MD; and Anthony L. Back, MD ØStep 2 and 3 – Propose a philosophyof treatment and thenrecommend a clear plan l After the meaning of “everything” has been explored, then propose a treatment plan consistent with the patient’s values and physician’s assessmentof condition/ prognosis. l Given what we know about (both patient and illness), it sounds like…, I recommend… Does that make sense to you? l Plans could include time limited trials,signs if treatments working or not, and options for various scenarios ØStep 4 – Support emotionalresponses and reiterate commitment to continue care no matter what the future holds. l These are difficultdiscussions l Tellme what is the hardest part for you l I can imagine that the future looks much less certain now that we had this discussion.

20. DiscussingTreatmentPreferences With Patients Who Want “Everything” TimothyE. Quill,MD; Robert Arnold, MD; and Anthony L. Back, MD ØStep 5 – Negotiatedisagreements l Reevaluate understandingof patient’s values and philosophy to enure a common understandingof his/her values. l Reiterateassessmentof condition and prognosis l Look for common ground and try to invent new solutions that might accommodateall perspectives ØStep 6 – Use a harm-reductionstrategy for continued requests for burdensometreatmentsthat are very unlikelyto work l Some patients and familiesmay value life extension much more highly than avoiding preventable suffering, other may have high distrust of the medical system, or other reasons. If this is clear continued attemptsto negotiate limit setting is unlikely to be productive and may feel abusive. l Proposes honoring patient’s philosophy and request for CPR by providing it and stopping after 1 fullcycle.

21. ConcludingThoughts ØNonbeneficialtreatment policiesare best seen as tools to improveand standardize a processof communication (and not just to providepatientsand physiciansa fair processfor conflict resolution) ØControversyregarding policiesor unilateraldecision making will not likely go away despitea growing community standard. l This is seen with brain death definitionswhere there has been a national community standard (allowingfor some tiny differences in a handful of states) but not yet a globally agreeable standard despite decades of experience.