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End of Life Decision Making -Approaches to Issues of Futility                             Bernard W. Freedman, JD, MPH    ...
Lecture Topics1) Ethically sound & legally mandated end-of-life decisions.2) Responsibilities of Surrogate Decision makers...
Autonomy                 The basis of respect and dignity• Every adult has the fundamental right of self  determination in...
Agency• You cannot serve two masters:• It’s Patient, not the Surrogate, who is the Principle or  “Master” who is owed your...
California Probate Code 4650An adult patient has the fundamental right to have life-sustainingtreatment withheld or withdr...
Hope• Overly aggressive treatment can reinforce false  hope and can put people through grueling and  costly ordeals when t...
Beyond FutilityClinicians overestimate cancer prognosis by 27%.            Glare P, Virik K, Jones M, et al. A systematic ...
Spending Not Linked to Survival• Report by National Cancer Institute, showed that  spending for advanced cancer care varie...
Dissecting Aortic Aneurysm• The patient, a 98 year old man was suffering from a  dissecting aortic aneurysm of 7.5 cm. He ...
Dissecting Aortic AneurysmThe hospital’s anesthesiologists initially refused to participate in thesurgery, stating that su...
Problems with determination of futility are often              caused by physiciansInstitute of Medicine study on improvin...
What matters to patients67%: Making sure family is not burdened financially by my care66%: Being comfortable and without p...
A Failure to Communicate
Maybe next time“It’s sometimes easier to just keep giving chemotherapy   than to have a frank discussion about hospice and...
Physicians are Obligated to Initiate Patient Dialogue   • Give patients the greatest opportunity to make his     or her ow...
Physicians Don’t Generally Discuss                 End of Life DecisionsIn a prospective cohort study in five tertiary  me...
Prolonged Ventilation   12% of the group posed the question to their   physicians         20% said that they wanted it;   ...
Effective vs. Excessive           Benefit of Treatment vs. Burden on Patient• Are we keeping the patient alive when there ...
What does the patient/surrogate need to  understand when considering futility• Diagnosis, prognosis• Burdens of Illness• E...
Surrogates and the Therapeutic Privilege• Physicians may decide that telling a patient the truth about their  illness is n...
Cultural Issues and Religious Mandates• Similarities to Therapeutic Privilege.• Ordinary vs. Extraordinary Treatment.• Pai...
Significant delay must not be permitted to impact             on patient’s best interests• A surrogate cannot be permitted...
Disqualification of a Surrogate•    A patient having capacity may disqualify, at anytime,     another person, including a ...
Cal Probate Code 4766• The Court may declare “…that the authority of an  agent or surrogate is terminated” when:• (1) The ...
Statutory Right of a Physician to Decline the           Provision of Futile CareA health care provider or health care inst...
Questions to consider• How do we educate surrogate decision makers as to their  acceptable roles and duties?• When should ...
Michael DeBakey M.D.
Do not mask futility with medicine• Things look better today, his   • He is still fighting this  white count has come down...
Don’t Frighten the Patient or Surrogate with the                 word “Futility.”• If you wait until a therapeutic impasse...
All Patients or surrogates have the                 Right to:• Be told the diagnosis and prognosis;• Be told what therapy ...
Time-Limited Trials• Gives surrogate opportunity and time to participate and  gain a better understand of the benefits and...
Risks of Demanding Futile Treatment          Must be Disclosed• Just as informed consent is required for the refusal  of t...
The degree of disclosure turns on the magnitude of the                           risk.The greater the risk the greater the...
Disease Trajectory• A variety of options should be addressed  as early as possible and relative to the disease trajectory....
Wendland v WendlandClear and Convincing Evidence of Intent                Video
California Probate Code 4765• 4765. …a petition may be filed by• (a) The patient• (b) The patients spouse, unless legally ...
Judicial PowerCalifornia Probate Code §3208 … • … the court may make an order authorizing   withholding or withdrawing art...
The Law for Withholding Life Sustaining Treatment                              Terminal   Non Terminal                    ...
Record Keeping• Records should state the:   • Medical Question Requiring A Medical Decision  • Describe the provision of i...
Racial and Ethnic Disparities in CareA study of the U.S. national cancer registry (SEER) found that:• African-American and...
Among patients in Medicare managed care (age 65 for older),         Black patients are less likely than White patients to ...
Patient Perception of DiscriminationThe perception or experience racial discrimination inBlacks, Hispanics and Asians has ...
Physician Perception of Patients     contributes to racial/ethnic disparities in care.• There is a growing body of evidenc...
Whites have Greater Odds of Receiving CarePatients who received a cardiology consultation had 5.13greater odds of receivin...
Transparency• Issues of futility address the most serious and  fundamental rights;• In cases where a patient has no surrog...
Seeking Review and Recommendations of Ethics                 Committees• Protects the patient;• Protects and supports the ...
Fundamental Right = Autonomy =         Ultimate responsibility• Health and Safety Code Section: 123100.•  Every person has...
Fundamental Right = Autonomy =           Ultimate Responsibility• It is, therefore, the intent of the Legislature in enact...
End of life decision making and approaches to issues of futility power point
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End of life decision making and approaches to issues of futility power point

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End of life decision making and approaches to issues of futility power point

  1. 1. End of Life Decision Making -Approaches to Issues of Futility Bernard W. Freedman, JD, MPH bwfreedman@netscape.net In sleep, we participate in the universal anonymity, we are every being; once pain rouses us, there is no one but ourselves, alone with our disease, with the thousand thoughts it provokes in us and against us. “Woe to this flesh which is at the mercy of the soul, and woe to this soul, at the mercy of the flesh!” - it is in the dead of certain nights that we grasp the entire significance of these words from the Gospel according to Thomas. The flesh boycotts the soul, the soul boycotts the flesh; deadly to each other, they are incapable of cohabiting, of elaborating in common a salutary lie, a tonic fiction. E. M. Cioran Law is born from despair of human nature. Jose Ortega y Gasset
  2. 2. Lecture Topics1) Ethically sound & legally mandated end-of-life decisions.2) Responsibilities of Surrogate Decision makers.3) Documenting end-of-life decision in the medical record.4) What is futile care?5) Dealing with a patient’s culture and religious needs.
  3. 3. Autonomy The basis of respect and dignity• Every adult has the fundamental right of self determination including decisions pertaining to his or her own health and the right to choose or refuse medical treatment.• This right is subject to certain interests of society, such as the protection of human life and the preservation of ethical standards in the medical profession.
  4. 4. Agency• You cannot serve two masters:• It’s Patient, not the Surrogate, who is the Principle or “Master” who is owed your allegiance. • Patient delegates MEDICAL decision making to Physicians. • Physicians MUST ELECIT patient’s, or the surrogates explanation of the patient’s, personal preferences, between alternative methods of treatment or non treatment.
  5. 5. California Probate Code 4650An adult patient has the fundamental right to have life-sustainingtreatment withheld or withdrawn.The prolongation of the process of dying for a person for whomcontinued health care does not improve the prognosis for recoverymay:Violate patient dignity, andCause unnecessary pain and suffering,While providing nothing medically necessary or beneficial
  6. 6. Hope• Overly aggressive treatment can reinforce false hope and can put people through grueling and costly ordeals when there is no chance of a cure or improvement in quality of life.
  7. 7. Beyond FutilityClinicians overestimate cancer prognosis by 27%. Glare P, Virik K, Jones M, et al. A systematic review of physicians survivalpredictions in terminally ill cancer patients. Br Med J (2003) 327:195-200Receiving care in a teaching hospital and living inan area with more teaching hospitals predisposemore aggressive care regardless of the relativechemo-sensitivity of the tumor. Earle CC, Landrum MB, Souza JM, et al. Aggressiveness of cancer care near the end of life: is it a quality-of-care issue? J Clin Oncol (2008) 26:2860-2866. Emanuel EJ, Young-Xu Y, Levinsky NG, et al. Chemotherapy use amongMedicare beneficiaries at the end of life. Ann Intern Med (2003) 138:639-643.
  8. 8. Spending Not Linked to Survival• Report by National Cancer Institute, showed that spending for advanced cancer care varied by up to 41% between high- and low-spending regions. But despite that range, there was no direct link between regional spending and the survival of patients with advanced disease. Regional Variation in Spending and Survival for Older Adults With Advanced Cancer. G. Brooks M.D., Dana Farber Cancer Inst. JNCI J Natl Cancer Inst (2013)
  9. 9. Dissecting Aortic Aneurysm• The patient, a 98 year old man was suffering from a dissecting aortic aneurysm of 7.5 cm. He was unresponsive and near death.• He previously, and with unquestioned capacity, executed an advance health directive indicating that he refused surgery.• He also had previously told his physician that he would rather die than to face the probable mental and physical damage and quality of life deterioration that would accompany such damage. 
  10. 10. Dissecting Aortic AneurysmThe hospital’s anesthesiologists initially refused to participate in thesurgery, stating that such an operation had never been performed onsomeone his age and in his condition, and also noted that patienthad refused the surgery.Principles of clinical bioethics would demand respect for the patient’swishes and directives.Patient’s spouse demands surgery.The patients clearly stated wishes and health care directives wereignored, disregarded and disrespected.The surgeons proceeded despite the dangers, because, they said: “We were doing what we thought was right.”
  11. 11. Problems with determination of futility are often caused by physiciansInstitute of Medicine study on improving care at the end of life 1.There is overuse of care; 2. Inconsistent with patient preferences and prognosis; 3. Underuse of care to treat symptoms; 4. Untimely referral to hospice; 5. Poor palliative care; 6. Poor communication regarding prognosis and treatment preferences. Annals of Internal Medicine (2001) 135:8.
  12. 12. What matters to patients67%: Making sure family is not burdened financially by my care66%: Being comfortable and without pain61%: Being at peace spiritually60%: Making sure family is not burdened by tough decisions about my care60%: Having loved ones around me58%: Being able to pay for the care I need57%: Making sure my wishes for medical care are followed55%: Not feeling alone44%: Having doctors and nurses who will respect my cultural beliefs and values36%: Living as long as possible33%: Being at home32%: Having a close relationship with my doctor Patients could select more than one response California HealthCare Foundation. http://www.chcf.org/publications/2012/02/final-chapter-death-dying
  13. 13. A Failure to Communicate
  14. 14. Maybe next time“It’s sometimes easier to just keep giving chemotherapy than to have a frank discussion about hospice and palliative care.” Dr. Craig Earle of the Dana-Farber Cancer Institute and Harvard Medical School.
  15. 15. Physicians are Obligated to Initiate Patient Dialogue • Give patients the greatest opportunity to make his or her own choices – Speak Early or Lose your Voice Communicate with the patient while you can - before loss of capacity.
  16. 16. Physicians Don’t Generally Discuss End of Life DecisionsIn a prospective cohort study in five tertiary medical centers found that: >77% of physicians failed to discuss CPR performance with seriously ill patients (n1589) Ann Intern Med. 1 July 1997;127(1):1-12
  17. 17. Prolonged Ventilation 12% of the group posed the question to their physicians 20% said that they wanted it; 80% said that they did not want it. (n 1573)Annals of Internal Medicine 1 July 1997 | Volume 127 Issue 1 | Pages 1-12
  18. 18. Effective vs. Excessive Benefit of Treatment vs. Burden on Patient• Are we keeping the patient alive when there is no benefit to the life of the patient?• Are we giving the patient time to recover to a level of quality of life that the patient will accept,• Or are we merely prolonging or exacerbating the process of death?
  19. 19. What does the patient/surrogate need to understand when considering futility• Diagnosis, prognosis• Burdens of Illness• Effectiveness of Treatment• Potential of rehabilitation, and• Diminished quality of life.• Right to refuse treatment, and• Right to request palliative care/comfort care
  20. 20. Surrogates and the Therapeutic Privilege• Physicians may decide that telling a patient the truth about their illness is not in the patient’s best interest from a medical standpoint.• This does not, however, apply to a surrogate decision maker.• If they won’t listen and or will not act, they cannot be a surrogate.• If a surrogate cannot fully and intelligently participate, then he or she cannot be the surrogate. Then a second surrogate must be identified, if possible. If not turn to a best interest standard.
  21. 21. Cultural Issues and Religious Mandates• Similarities to Therapeutic Privilege.• Ordinary vs. Extraordinary Treatment.• Pain control which may hasten death.
  22. 22. Significant delay must not be permitted to impact on patient’s best interests• A surrogate cannot be permitted to cause a delay in decision making which will harm the patient.• If a surrogate cannot or will not be fully informed and understand the diagnosis and prognosis, he or she may not continue as surrogate• If a surrogate cannot or will not decide – find a new surrogate, or move to a best interest standard.
  23. 23. Disqualification of a Surrogate• A patient having capacity may disqualify, at anytime, another person, including a member of the patient’s family, from acting as the patient’s surrogate by a signed writing, or by personally informing the supervising healthcare provider of the disqualification. (California Probate Code Section 4715).• Such disqualification should be promptly recorded in the patient’s healthcare record, noting the date and time of such declaration.
  24. 24. Cal Probate Code 4766• The Court may declare “…that the authority of an agent or surrogate is terminated” when:• (1) The agent or surrogate has violated, has failed to perform, or is unfit to perform, the duty under an advance health care directive to act consistent with the patients desires or, where the patients desires are unknown or unclear, is acting (by action or inaction) in a manner that is clearly contrary to the patients best interest. (AND)• 2) At the time of the determination by the court, the patient lacks the capacity to execute or to revoke an advance health care directive or disqualify a surrogate.
  25. 25. Statutory Right of a Physician to Decline the Provision of Futile CareA health care provider or health care institutionmay decline to comply with an individual healthcare instruction or health care decision thatrequires medically ineffective health care orhealth care contrary to generally accepted healthcare standards applicable to the health careprovider or institution. California Probate Code § 4735
  26. 26. Questions to consider• How do we educate surrogate decision makers as to their acceptable roles and duties?• When should we decline to follow the apparent wishes of the patient, or the stated desires of the family?• When is it prudent to exercise what is known as the “therapeutic privilege” and turn to a more paternalistic approach to patient care? 
  27. 27. Michael DeBakey M.D.
  28. 28. Do not mask futility with medicine• Things look better today, his • He is still fighting this white count has come down infection, we don’t know yet somewhat… if he will be able to overcome it… • If we cannot wean him we• We think we can wean him should talk about whether he tomorrow - if not, we can would want to have a trach him… tracheostomy and go to a long term nursing facility, or refuse further treatment.
  29. 29. Don’t Frighten the Patient or Surrogate with the word “Futility.”• If you wait until a therapeutic impasse to tell the patient or surrogate we create panic rather than understanding –• We risk loosing the patient’s or surrogate’s ability to reason and discuss;• This leads to protest, denial and anger with the medical treatment that you have been providing;• It sets the stage for allegations of malpractice.
  30. 30. All Patients or surrogates have the Right to:• Be told the diagnosis and prognosis;• Be told what therapy is effective;• Told of the option to Refuse Treatment • To: Increase and enhance their knowledge of the disease process and alternative approaches to treatment,.
  31. 31. Time-Limited Trials• Gives surrogate opportunity and time to participate and gain a better understand of the benefits and burdens of treatment;• To allow families to work through grief and intelligently participate in evaluating treatment options and the patient’s values and wishes.
  32. 32. Risks of Demanding Futile Treatment Must be Disclosed• Just as informed consent is required for the refusal of treatment, it is also required for the demand of futile treatment: the patient /surrogate must be told of: • Unnecessary Suffering • Unnecessary Prolongation of Imminent Death • Needless anguish, fear and insecurity of loved ones.
  33. 33. The degree of disclosure turns on the magnitude of the risk.The greater the risk the greater the required disclosure – the more detailed and justified the record must be.
  34. 34. Disease Trajectory• A variety of options should be addressed as early as possible and relative to the disease trajectory. In addition to discussing the anticipated medical course, differing degrees of brain injury or damage, the likelihood of recovery and anticipated risks and treatment options and related issues of quality of life
  35. 35. Wendland v WendlandClear and Convincing Evidence of Intent Video
  36. 36. California Probate Code 4765• 4765. …a petition may be filed by• (a) The patient• (b) The patients spouse, unless legally separated.• (c) A relative of the patient• (d) The patients agent or surrogate• (e) The conservator of the person of the patient• (f) The court investigator, …• (g) The public guardian• (h) The Primary treating physician or hospital caring for the patient• (i) Any other interested person or friend of the patient.
  37. 37. Judicial PowerCalifornia Probate Code §3208 … • … the court may make an order authorizing withholding or withdrawing artificial nutrition and hydration and all other forms of healthcare where the recommended healthcare is in accordance with the patient’s best interest, taking into consideration the patient’s personal values to the extent known to the petitioner.
  38. 38. The Law for Withholding Life Sustaining Treatment Terminal Non Terminal Yes Yes PVS Yes CCE of Pt’s Intent Minimally Conscious
  39. 39. Record Keeping• Records should state the: • Medical Question Requiring A Medical Decision • Describe the provision of information sufficient to make an informed decision (consent) by the patient or surrogate. • Forms
  40. 40. Racial and Ethnic Disparities in CareA study of the U.S. national cancer registry (SEER) found that:• African-American and Hispanic men received had longer time intervals between diagnosis and receipt of medical monitoring visit.• Nearly 6% of African-American men and 5% of Hispanic men as compared to 1% of white men did not have any medical monitoring visits or procedures during the 60-month follow up period.• Source: Shavers VL, Brown ML, Klabunde CN, Potosky AL, Davis WW, Moul JW, Fahey A. “Race/ethnicity and the intensity of medical monitoring under ‘watchful waiting’ for prostate cancer. Medical Care, March 2004, 42 (3):239-250
  41. 41. Among patients in Medicare managed care (age 65 for older), Black patients are less likely than White patients to receive breast cancer screening 80% 70.9% 62.9% * 60% 40% 20% 0% African American WhiteSource: Schneider EC, Zaslavsky AM, Epstein AM. Racial disparities in the quality ofcare for enrollees in Medicare managed care. JAMA. 2002 Mar 13;287(10):1288-94.
  42. 42. Patient Perception of DiscriminationThe perception or experience racial discrimination inBlacks, Hispanics and Asians has been associated with:• Giving birth to a low birth weight infant• Higher levels of elevated blood pressure• Smoking• Higher rates of depression• Consuming higher levels of alcohol Ethn Dis. 2009 Summer; 19(3): 330–337.
  43. 43. Physician Perception of Patients contributes to racial/ethnic disparities in care.• There is a growing body of evidence suggesting that provider behavior and decision-making contribute significantly to racial/ethnic disparities in care• However, little is known as to why.• Am J Public Health. 2006 February; 96(2): 351–357.• Maynard C, Fisher LD, Passamani ER, Pullum T. Blacks in the Coronary Artery Surgery Study (CASS): race and clinical decision making. Am J Public Health. 1986;76:1446–1448• Ayanian JZ, Cleary PD, Weissman JS, Epstein AM. The effect of patients’ preferences on racial differences in access to renal transplantation. N Engl J Med. 1999; 341:1661–1669• Strakowski SM, Lonczak HS, Sax KW, et al. The effects of race on diagnosis and disposition from a psychiatric emergency service. J Clin Psychiatry. 1995;56:101–107
  44. 44. Whites have Greater Odds of Receiving CarePatients who received a cardiology consultation had 5.13greater odds of receiving coronary angiography.•White patients had 2.2 greater odds of receiving acardiologist consultation.•White patients had 3.04 greater odds of receiving coronaryangiography. LaVeist TA, Arthur M, Morgan A, Plantholt S, Rubinstein M. Explainig racial differences in receipt of coronary angiography: the role of physician referral and physician specialty. Med Care Res Rev. 2003 Dec;60(4):453-67
  45. 45. Transparency• Issues of futility address the most serious and fundamental rights;• In cases where a patient has no surrogate, it is advisable to have the Ethics Committee at your hospital review the case and support your decision. Note in your progress record your meeting with, and recommendations of the Ethics Committee.• Discussions with patients and families regarding, DNR orders; transfer to hospice; withdrawal or withholding of treatment, must be noted with specificity, and if possible, before a witness.
  46. 46. Seeking Review and Recommendations of Ethics Committees• Protects the patient;• Protects and supports the Primary Treating Physician’s decision;• Assists the Court, if it’s assistance is sought
  47. 47. Fundamental Right = Autonomy = Ultimate responsibility• Health and Safety Code Section: 123100.•  Every person has• The ultimate responsibility for his or her own health care, and• Possesses a concomitant right of access to complete information respecting his or her condition and care provided. Health and Safety Code Section: 123105 It is, therefore, the intentf others.• (d) "Patient records" means records in any form or medium maintained by, or in the custody or control of, a health care provider relating to the health history, diagnosis, or condition of a patient, or relating to treatment provided or proposed to be provided to the patient. 
  48. 48. Fundamental Right = Autonomy = Ultimate Responsibility• It is, therefore, the intent of the Legislature in enacting this chapter to establish procedures for providing access to health care records or summaries of those records by patients and by those persons having responsibility for decisions respecting the health care of others.

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