Communication & End of Life Issues

Goals of Healthcare Restore health Relieve suffering These goals are not incompatible. The treatment being offered must be defined within the context of the goals.

Geriatric ICU Care 70% ICU admissions over age 60 ICU mortality for age > 60 = 70% 11% Medicare recipients spend > 7 days in ICU within 6 months before death 77% of Medicare costs in last year of life

Communication Around 50% of family members have misunderstanding of Diagnosis, Prognosis, or Treatment after meeting the Physician Conducting Family Conference is very Important The essence of family conference are consistent communication & a private place for communication

Communication The behaviors which improve family communication are V – value statements/questions made by family members A - acknowledge family emotions L - listen to family members U - understand & address who the patient is E – elicit family questions

Surrogate It is important for the physician to identify a suitable family member as a surrogate decision maker for the patient Family means spouse, children, parents, next of kin, or even a trusted friend

Recommendation 1 The physician has a moral and legal obligation to disclose to the capable patient/family, with honesty and clarity, the dismal prognostic status of the patient with justification when further aggressive support appears non-beneficial. The physician is obliged to initiate open discussions around the imminence of death or intolerable disability, the benefits and burden of treatment options and the appropriateness of allowing natural death.

Recommendation 2 When the fully informed capable patient/family desires to consider the overall treatment goal of “comfort care only” option, the physician should explicitly communicate the standard modalities of limiting life-prolonging interventions Options – Full support - Do not intubate(DNI), DNR status - Withholding of life support - Withdrawal of life support - Palliative care

Withholding of Treatment Not initiating a therapy that has a disproportionate burden without achieving reasonable clinical goals (Intubation, vasopressors, mechanical ventilation, dailysis, IV fluids, enteral or parenteral feeds)

Withdrawing vs. Withholding Withholding a treatment is viewed as equivalent to withdrawing an intervention. Distinction between failing to initiate and stopping therapy is artificial. Justification that is adequate for not commencing treatment is sufficient for ceasing it.

Withdrawal vs. Withholding No presumption that, once begun, no matter how futile, the treatment must be continued. No difference between withdrawal and withholding. Not “care” but treatment. We still care for the patient but do not offer or continue non-medically beneficial treatment.

Withdrawal and Withholding % of ICU deaths preceded by decision to withdraw or withhold treatment % of ICU deaths Includes DNR orders

Withdrawal of Mechanical Ventilation N Engl J Med, ICUs Examine clinical determinants associated with withdrawal of mechanical ventilation 851 patients: 539 weaned (63.3%) 146 died (17.2%) 166 withdraw (19.5%)

Withdrawal of Mechanical Ventilation Need for inotropes or vasopressors Physician’s prediction of survival < 10% Physician’s prediction of limitation of future cognitive function Physician’s perception that patient did not want life support used

Withdrawing vs. Withholding Withholding a treatment is viewed as equivalent to withdrawing an intervention. Distinction between failing to initiate and stopping therapy is artificial. Justification that is adequate for not commencing treatment is sufficient for ceasing it. Withdrawing & Withholding are considered equivalent ethically & legally by the critical care community. Troug et al. Crit Care Med Physicians have strong biases that significantly affect their decisions to withdraw life sustaining treatment. Christaxis et al. Public health 1995

Withdrawal vs. Withholding No presumption that, once begun, no matter how futile, the treatment must be continued. No difference between withdrawal and withholding. Not “care” but treatment. We still care for the patient but do not offer or continue non-medically beneficial treatment.

Withdrawal of Support All ethical issues relating to withdrawal should be discussed. Decision making in the ICU needs interaction of clinicians, nurses, primary & consulting physicians & their interaction with the patient & family Once it is established that all parties agree that the best option for the patient is that the life support can be withheld or withdrawn There is no need to taper vasopressors, antibiotics, nutrition & most other critical care treatments

Withdrawal of Support “Terminal Ventilator discontinuation” – FiO2 reduced to room air, ventilator support reduced to zero, possible distress & pain prevented by dosing of opiods, patient placed on T-piece or extubated. The transition from full ventilatory support to extubation should take less than min. The physician should continue to be available to the family for guidance & discussion. Families should be cautioned that death, while expected, may not be certain & the timing can vary.

Withdrawal of Support For patients discharged home for terminal care, suitable arrangements for transport & home care should be made The patient’s family should have free access to the patient during the last days of his life The patient should be allowed every opportunity to experience spiritual meaning & fulfillment Performance of unobtrusive bedside religious services or rites may be encouraged

Active Euthanasia Actively shortening the dying process Performing an act with the specific intent of shortening the dying process Overdose of narcotics, anesthesia, paralytics, etc. It is not the absolute dose of narcotics, but a change in the dose

Surrogate Consent Patient lacks decisional capacity Apply substituted judgment Promote patient’s wishes and express beliefs of the patient “What would your loved one do in this situation?” Avoid implication of “pulling the plug” Not ending life but avoiding prolonged suffering

Withholding Treatment Case scenario: 60-year-old male Widely metastatic colon cancer S/p exp lap, bypass of obstructing lesion Develops SOB on floor, transferred to ICU Minor distress, unable to give consent, no family at all Would you intubate him?

Withholding Treatment Options: Intubate him Trial of days to see is he improves on vent. Continue intubation until he dies in ICU Do not intubate him Several MDs document that mechanical ventilation will not benefit him medically Continue to provide comfort therapy

Withholding Treatment “For a patient with metastatic cancer and liver failure, respiratory support on a ventilator does not even have to be offered because it will only prolong a death rather than provide treatment of the disease.” Hening, 2001

Recommendation 3 The physician must elicit and respect the choices of the patient expressed directly or through his family(surrogates) during family conferencing sessions and work towards a shared decision-making. He should thus ensure respect of the patient’s autonomy in making an informal choice, while fulfilling his/her obligation to provide beneficent care.

Early, open, & effective communication facilitates a more smooth transition from curative to palliative care, reduces the frequency of futile care & decreases the possibility of conflict & litigation between families & health care workers.

Effective Communication & Family Satisfaction Adequate time (multiple counseling sessions & privacy) Frequent & consistent information provided by a single contact physician Adequacy of physician & nurses Ensuring enough time for the family to ask questions & express themselves Help from family physician

Recommendation 4 Pending consensus decisions or in the event of conflict with the family/patient, the physician must continue all existing life supportive interventions. The physician however, is not morally or legally obliged to institute new therapies against his/her better clinical judgment in keeping with accepted standards of care.

Recommendation 5 The discussions leading up to the decision to withhold life-sustaining therapies should be clearly documented in the case records, to ensure transparency & to avoid future misunderstandings. Such documentation should mention the persons who participated in the decision making & the treatments withheld or withdrawn.

Recommendation 6 The overall responsibility for the decision rests with the attending physician/intensivist of the patient, who must ensure that all members of the caregiver team including the medical & nursing staff agree with & follow the same approach to the care of the patient.

Recommendation 7 If the capable patient or family consistently desires that life support be withdrawn, in situations in which the physician considers aggressive treatment nonbeneficial, the treating team is ethically bound to consider withdrawal within the limits of existing laws.

LAMA, DORB Often stated, initiated on request of family on financial grounds Used by physician often with tacit support of the administration to transfer responsibility & culpability Absolve the medical community of responsibility to deal with questions of treatment withdrawal Dishonest & unethical

Recommendation 8 In the event of withdrawal or withholding of support, it is the physicians obligation to provide compassionate & effective palliative care to the patient as well as attend to the emotional needs of the family.

Principle of Double Effect Ensuring adequate palliation while differentiating clinician actions from active hastening of death Distinction based on intent of action Use of pain medicines to relieve pain and suffering

Withdrawal of Support All ethical issues relating to withdrawal should be discussed Possible distress & pain will be prevented by medication & prompt action The physician should continue to be available to the family for guidance & discussion For patients discharged home for terminal care, suitable arrangements for transport & home care should be made

Withdrawal of Support The patient’s family should have free access to the patient during the last days of his life The patient should be allowed every opportunity to experience spiritual meaning & fulfillment Performance of unobtrusive bedside religious services or rites may be encouraged

Brain Death Irreversible cessation of all functions of brain including the brainstem Does not include persistent vegetative state The above criteria allows removal of life support Transplantation of Human Organ Act 1994 Brain death law needs to be modified

Non-medically Beneficial Treatment (Futile Care) It is well established in medical ethics and law that it is appropriate to withhold medical intervention when such interventions provide no reasonable likelihood of benefit to the patient.

Non-medically Beneficial Treatment (Futile Care) How is medical futility defined? Disease must be terminal Disease must be irreversible Death must be imminent Merely preserves permanent unconsciousness or cannot end dependence on intensive medical care Clear legal definition does not exist

Non-medically Beneficial Treatment (Futile Care) Case scenario: 85-year-old male MVC, rib fx Vent.-dependent for 6 months Wife continues to “want everything done” Develops renal failure

Non-medically Beneficial Treatment (Futile Care) Would you offer dialysis? If so, why? If not, why not?

Non-medically Beneficial Treatment (Futile Care) “Physicians are not obligated to provide care they consider physiologically futile even if a patient or family insists. If treatment cannot achieve its intended purpose, then to withhold it does not cause harm. Nor is failure to provide it a failure of standard of care.” Luce, 2001

Non-medically Beneficial Treatment (Futile Care) “Physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients. Patients should not be given treatments simply because they demand them. Denial of treatment should be justified by reliance on openly stated ethical principles and acceptable standards of care, not on the concept of ‘futility,’ which cannot be meaningfully defined.” AMA

Futile Care & Unilateral Action Prognosis of imminent death Metastatic cancers with failed treatment Very elderly with dementia Chronic vegetative state with organ dysfunction

Futile Care & Unilateral Action Second opinion Multiple counseling (hopeless prognosis) Committee of doctors for counseling Suggesting transfer of patient Judicial review has no precedence in India Therefore unilateral action is not available to the Indian physician at present.

Brain Death Irreversible cessation of all functions of brain including the brainstem Does not include persistent vegetative state In India, brain death is defined only for the purpose of the Transplantation of Human Organ Act Indian law does not define the state of brain death in contexts other than organ transplantation. In the opinion of the Committee(ISCCM guidelines), brain death should be regarded, as equivalent of death in all circumstances and the law should be suitably amended.

Aruna Shanbaug ( ) The honourable judges for the first time pronounced that brain death (when brain activity has ceased while the patients breathing is sustained artificially) is equivalent to death. This would allay physicians apprehensions about removing life supports from such a patient & would improve organ retrieval opportunities for organ transplantation.

Indian Law Commission The term “Passive Euthanasia” as opposed to active killing (Euthanasia) is misleading and therefore no more used in contemporary medical terminology. Mani R K Withdrawal & withholding decisions are distinct from Euthanasia and therefore do not violate suicide laws. 196 th report of Indian Law Commission, 2006, Justice Jagannadha Rao

Legal Issues Indian law has no clearly stated position Needed Right to refuse treatment act Withdrawal & withholding of life-sustaining treatment act Right to palliative care act A consensus regarding the practices relating to End of Life care in Indian ICUs should eventually lead to evolution of appropriate legislation in keeping with the changing needs of critical care practice

Legal Issues Only clear legal rule on medically futile treatment is traditional malpractice test Likely to get better legal results when refuse to provide nonbeneficial treatment and then defend position in court as consistent with professional standards than when seek advance permission from court to withhold treatment

End-of-life decisions in an Indian intensive care unit Intensive Care Med(2009) 830 ICU patients 88 (10.6%) died. 45 patients had Full Support 43 (48.8%) had End-of-life decision. The EOLD group had DNR in 15 (35%), Witholding support in 25 (58%) Withdrawing support in 3 patients (7%).

End-of-life decisions in an Indian intensive care unit Intensive Care Med(2009) About half the deaths among ICU patients involved decisions to limit life support. Witholdings were the most frequent, while Withdrawals were few. Most decisions were taken in the first 2 weeks of ICU stay. End-of-life decisions was associated with a longer ICU stay but with reduced burdens around the time of death. Ethical decision-making in the terminally ill is achievable in India despite the perceived legal and societal barriers.

CPR Developed in 1960s Intended for victims of unexpected death: drowning drug intoxication heart attacks asphyxiation 75% survival on television 15% survival of hospitalized patients

CPR Not intended as a routine at time of death to include cases of irreversible illness for which death was expected Unclear how it became the “standard of care” Unique among medical interventions as it requires a written order to preclude its use

CPR “A physician’s decision supported by consultants to withhold CPR is a medical decision and cannot be overridden. Patient autonomy and consumerism does not extend to medically futile care.” Weil, 2000

CPR Physically and emotionally traumatic Significant likelihood of iatrogenic injury Disrupts the care of the living Communicates false hope to the families

CPR Moral, ethical, and legal justification for a physician’s refusal to perform CPR when there is medical consensus that CPR will not be beneficial

CPR Predictors of outcome: Favorable respiratory arrest unexpected witnessed Unfavorable (no survival to discharge) not witnessed pulseless electrical activity asystole

CPR Age is not a major predictor of outcome. Underlying medical conditions are a predictor. CPR greater than 10 minutes - no survivors

CPR Greek study, Resuscitation, 2003 CPR in general adult ICU 111 patients CPR preformed in 98.2% within 30 seconds 24-hour survival - 9.2% Survival to discharge - 0

DNR “DNR orders only preclude resuscitative efforts in the event of cardiopulmonary arrest and should not influence other therapeutic interventions that may be appropriate for the patient.” AMA

Summary Communication with families in ICU has gained scientific credibility & is nowadays considered as a priority target to achieve excellence in End-of-Life care in ICU. Communication with family members should be seen as a key-component of family- centred care near End-of-Life The awareness of ICU caregivers & training in communication provided to every medical student & ICU residents is essential.

Summary Value end-of-life care & make it an important part of the rounds & documentation. Nurses & other ICU clinicians of the interdisciplinary team should take responsibility for end-of-life decision making & care. Hospitals should humanise ICUs by liberalising visiting hours, & providing educational material about the ICU & critical illness. Azoulay et al 2002

Summary Withdrawal of life support should be considered a clinical procedure that warrants attention & quality improvement. Protocols for withdrawing life sustaining treatment & forms for documenting this process should be considered. Treece et al 2004

Summary Death is a process, not an event. Dignity in dying is as important as preserving life. Palliative treatment is a crucial part of ICU care. Withdraw and withholding are equivalent. Early and frequent communication with families is important.

Conclusion ICUs have 2 major goals: 1.Save lives by intensive and invasive therapies. 2.Provide a peaceful and dignified death when death is inevitable.