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THE END OF LIFE AARTI RAGHU, M.D. “…. death, a necessary end, will come when it will come.” - William Shakespeare What we’re going to talk about.. Issues with End of Life Care The numbers How are we doing? Ethical Issues Determining goals of care - Informed consent Advance directives Communication - Housestaff and communication Withdrawal of Medical care and Legal Issues Euthanasia Futility Physician withdrawal from patient care When a patient dies- impact on physicians Websites for patients Why talk about it? A century ago, most people with traumatic injuries, serious infections, heart disease or cancer had little expectation of a long life after diagnosis Most people expected little more than comfort measures from doctors. Today, death is often seen as an event that can be deferred indefinitely rather than as an intrinsic part of life. Medical procedures commonly extend the lives of people who have such diseases as heart disease, cancer, stroke, chronic obstructive pulmonary disease, pneumonia, and dementia, often giving them many years in which quality of life and function are quite good but not always so. Talking about the likely outcomes of illness, including death and dying, is an important part of health care. Health care providers vary in their comfort levels discussing end of life issues. There is a lack of formal education for providers regarding end of life Societal Attitudes As a society - we do not accept death. We have deformed the process of dying. Death is a failure Death is often taboo Mastery over nature Legal paranoia Palliative care is giving up Fear of addiction (drugs) Lack of reimbursement for palliative care Health care system focuses on and reimburses for acute care interventions What are some of the problems Vanishing line between old age & death - - - old age is a disease to be conquered/controlled live for years with chronic illnesses biomedicalization of aging has replaced the cultural understanding of aging (religion, nature, family) we can orchestrate & control the timing of death The technological imperative - success reinforces use of technology - death can be conquered - goal of medicine - cure - implicit moral imperative to “do something” Gulf between lay & medical worlds - new frontier - vast gulf between medical knowledge & lay - family members make decisions based on medical world of aging & death/ not the patients life experience Lack of clarity with treatment goals - “everything done” - Goals are not clarified within patient values & quality of life “What is needed to bring about change is something more fundamental, that is a hard look at a medical culture in which doctors have access to splendid life saving technology & feel obligated both morally and legally to use it.” _ Daniel Callahan Director, International Program Co-Founder of The Hastings Center The Hastings Center is an independent, nonpartisan, and nonprofit bioethics research institute founded in 1969 to explore fundamental and emerging questions in health care, biotechnology, and the environment. New Goals Death is expected Care of the dying is integral to health care Palliative Care Active total care which embraces the notion of alleviating and easing symptoms in lieu of continuing to attempt a “cure” Palliative care affirms life and regards dying as a normal process Palliative care is not giving up or losing hope. Palliative care is aggressive caring! Palliative care is aggressive symptom management More reasons to talk about it… In one study, elderly patients with chronic illnesses were more satisfied with their primary care physicians and outpatient visits when advanced directives were discussed. (1) Apparent severity of chronic illness does not necessarily predict patient desire for EOL discussions. One study found that patients at later stages of chronic lung disease were no more or less interested in such discussions than patients with earlier stage chronic lung disease. (2) Among all the patients studied, 85 percent desired EOL discussions. The statistics % of institutional deaths (NCHS, CDC 1998 data) 56% in a hospital, clinic, or medical center; 19% in a nursing home; 21% of people died at home. (3) Almost half of those who die in the hospital have been cared for in an intensive care unit (ICU) within 3 days prior to their death. (4) Trends and Patterns in Place of Death,19892000 Jay S. Buechner, PhD Rhode Island Department of Health, Office of Health Statistics:Turning numbers into knowledge Vol. 4, No. 9 September 2002 In the ICUs of tertiary care centers, the withdrawal or withholding of life support precedes death in 65% to 90% of all deaths. (4) The prevalence of written Advance directives is about 25% and did not significantly increase after the passage of the Patient Self Determination Act (5) End-of-life care consumes 10% to 12% of all health care expenditures and 27% of Medicare expenditures in the United States. In 1999, terminal hospitalizations accounted for 7.5% of all inpatient costs. Studies have shown that the amount that might be saved by reducing the use of aggressive life-sustaining treatment for dying patients is 3.3% of total national health expenditures. (4) The incremental cost per QALY of providing rather than withholding ventilator support and restorative care increase across prognostic strata in terminally ill patients (SUPPORT study) The cost was $24,000 per QALY among low-risk patients, $44,000 per QALY among medium-risk patients, $110,000 per QALY among high-risk patients. Although treatment of low- and medium-risk patients appeared to be cost-effective, the incremental cost per QALY for those patients with a less than 50% chance of surviving at least 2 mo after diagnosis did not compare favorably with other medical interventions, such as therapy for severe hypertension or coronary artery bypass surgery. Schapira and colleagues - fewer than ¼ of cancer patients who were mechanically ventilated for acute respiratory failure survived the ICU or spent more than 3 mo at home before dying. Overall, the cost per year of life gained at home was $95,142 for patients with solid tumors and $449,544 for patients with hematologic malignancies. (6) Wachter and coworkers - analysis of patients with the acquired immunodeficiency syndrome (AIDS) who received mechanical ventilation for severe Pneumocystis carinii pneumonia (PCP). The cost of ICU admission of subsequent hospitalization for the 25% of patients who left the ICU alive averaged $174,787 per year of life saved over the 10 yr of this study. (7) End of Life Care- How are we doing? The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA. 1995 Nov 22-29;274(20):1591-8 OBJECTIVES--To improve end-of-life decision making and reduce the frequency of a mechanically supported, painful, and prolonged process of dying. DESIGN--A 2-year prospective observational study (phase I) with 4301 patients followed by a 2-year controlled clinical trial (phase II) with 4804 patients and their physicians randomized by specialty group to the intervention group (n = 2652) or control group (n = 2152). SETTING--Five teaching hospitals in the United States. PATIENTS--A total of 9105 adults hospitalized with one or more of nine lifethreatening diagnoses; an overall 6-month mortality rate of 47%. INTERVENTION--Physicians in the intervention group received estimates of the likelihood of 6-month survival for every day up to 6 months, outcomes of cardiopulmonary resuscitation (CPR), and functional disability at 2 months. A specifically trained nurse had multiple contacts with the patient, family, physician, and hospital staff to elicit preferences, improve understanding of outcomes, encourage attention to pain control, and facilitate advance care planning and patient-physician communication. RESULTS The phase I observation documented shortcomings in communication, frequency of aggressive treatment, and the characteristics of hospital death: only 47% of physicians knew when their patients preferred to avoid CPR 46% of do-not-resuscitate (DNR) orders were written within 2 days of death 38% of patients who died spent at least 10 days in an intensive care unit (ICU) and for 50% of conscious patients who died in the hospital, family members reported moderate to severe pain at least half the time During the phase II intervention, patients experienced no improvement in patient-physician communication ( 37% of control patients and 40% of intervention patients discussed CPR preferences) or in the five targeted outcomes, ie, incidence or timing of written DNR orders (adjusted ratio, 1.02; 95% confidence interval [CI], 0.90 to 1.15), physicians' knowledge of their patients' preferences not to be resuscitated (adjusted ratio, 1.22; 95% CI, 0.99 to 1.49), number of days spent in an ICU, receiving mechanical ventilation, or comatose before death (adjusted ratio, 0.97; 95% CI, 0.87 to 1.07), or level of reported pain (adjusted ratio, 1.15; 95% CI, 1.00 to 1.33). The intervention also did not reduce use of hospital resources (adjusted ratio, 1.05; 95% CI, 0.99 to 1.12). CONCLUSIONS— The phase I observation of SUPPORT confirmed substantial shortcomings in care for seriously ill hospitalized adults. The phase II intervention failed to improve care or patient outcomes. Enhancing opportunities for more patient-physician communication, although advocated as the major method for improving patient outcomes, may be inadequate to change established practices. To improve the experience of seriously ill and dying patients, greater individual and societal commitment and more proactive and forceful measures may be needed. ETHICAL ISSUES Autonomy and beneficence The principle of autonomy dictates that the patient has the right to choose among offered therapies and the right to refuse any treatment even though this decision may result in the patient's death. In contrast, the principle of beneficence dictates that medical personnel have the obligation to help further the patient's own legitimate interests. Since preservation of life is a legitimate interest of the patient, the refusal of lifeprolonging therapy creates the potential for conflict. Allowing the patient to die can be viewed as a violation of beneficence, while forcing the patient to undergo heroic supportive measures is a violation of his or her autonomy. In the United States a consensus has been achieved that autonomy takes precedence over other considerations. Autonomy and nonmaleficence — Nonmaleficence can be defined simply as not inflicting evil or harm The principle of nonmaleficence requires that persons refrain from providing interventions, which in their judgment, are likely to be of more harm than benefit. Often, patients request interventions which are without benefit and are harmful or dangerous. It can be argued that nonmaleficence is a right of the physician (or other health care provider) to refuse to participate in practices which are judged to be harmful to the patient. Non-abandonment and nonmaleficence — Judgments made regarding the appropriateness of a specific intervention are not always unanimous On the one hand, the physician is obliged to refrain from providing treatments that he or she feels are inappropriate; on the other, the physician must not abandon the patient. The physician is obliged to help the patient or surrogate understand the issues but, if this fails and the physician feels it would be morally wrong to continue to be involved with the care plan, then it is imperative that he or she attempt to find another physician willing to continue care of the patient in the prescribed manner. The physician must continue to care for the patient until such a physician is found. The patient may refuse other physicians, wanting to continue with the current physician; this does not mean that the physician is in any way obligated to perform the disputed intervention. Disclosure and beneficence — Physicians have an obligation to disclose relevant medical information to patients and families. A few patients (13 percent in one study (8) ) do not want to participate in end-of-life decisions. One survey of critical care physicians found that 14 percent reported that they had withdrawn care from patients without informing the patient's family. (9) Fair allocation of societal resources —society does not have unlimited financial resources to provide the "best possible" health care for all. Duty to an individual patient and to society as a whole may conflict in cases in which limited resources are disproportionately consumed by a critically ill individual. cost of cardiopulmonary resuscitation alone has been estimated at nearly $500,000 per life saved. End of life care consumes 10 to 12 percent of all healthcare expenditures and 27 percent of all Medicare expenditures. (10, 11) Case Scenario 56 yo male 5 months s/p palliative choledochoenterostomy for metastatic Ca of the head of the pancreas >30 lb. weight loss since operation and increasing weakness/fatigue (esp. last 2 months) Postprandial vomiting for last 3 weeks Very large distended stomach with mass obstructing proximal duodenum - endoscopist unable to stent Patient asks you to “fix it!” (When Do We Stop and How Do We Do It? Medical Futility and Withdrawal of Care Daniel B.Hinshaw, M.D.,FACS, Ann Arbor,MI. www.facs.org/education/congress2002) Case Scenario – continued What should you do next? 1) Tell the patient: “ It’s hopeless. There’s nothing more that can be done.” 2) Place a PEG for gastric decompression. 3) Determine the patient’s understanding of the problem. What does he mean by “fix it”? 4) Encourage endoscopist to reattempt stenting of the obstructed segment of duodenum. 5) Institute NG decompression in anticipation of performing a palliative gastrojejunostomy. Case Scenario – continued What is the problem here? Is it about a series of inadequate treatment options? It’s really about •Defining the goals of care (i.e., the patient’s goals) even before entering the ICU • Advanced Care Planning • Communication Determining the Goals of Care Ask the informed patient. The patient’s goals of care should always be a central feature of informed consent. Remember the context. What is realistic under the circumstances? Set achievable goals with the patient (eg. reduce vomiting to once/day and control nausea). Informed consent Upto the1970s- medical decisions were made by the physician without participation from the patient. This paternalism emphasized beneficence to the exclusion of other principles, particularly autonomy. Studies show physicians are not always able to determine what is in their patients' best interests – their own preferences may be a bias.(12) and biases are unavoidable.(13, 14) By the mid-1980s- emphasis was on patient autonomy due to increased valuing of patient autonomy by society at large questioning of the assumption of physician beneficence in an era of cost containment Physicians began to act as impartial agents for their patients who were considered "clients" with the power to chose any therapy they desired. Even giving advice was considered exerting an inappropriate influence. This overemphasis on autonomy still exists in many ways. Patients or family members are often made to feel that they have to "make the decision" regarding decisions to resuscitate. Often poorly informed patients are confronted with an open-ended request to tell the medical team what "they want to have done." Often their response was to have "everything done" and this was accepted by the physician as a request for cardiopulmonary resuscitation when the physician, in fact, thought that this would be a mistake. In this scenario, the physician abandoned his or her traditional responsibility to protect the patient against inappropriate therapy in favor of complete autonomy. This diminished autonomy by depriving patients of expert advice. Therapy was chosen based on unrealistic beliefs; silence by the physicians interpreted as tacit approval. The pendulum has begun to swing back from absolute autonomy toward a more balanced approach. These models have been termed - enhanced autonomy - the fiduciary role A model based solely on one principle (such as autonomy) is no better than one based solely on another (eg, beneficence). Who gives consent? The patient is the primary decision maker if he has….. The ability to communicate The ability to understand the proposed treatment and alternative interventions - ask the patient to paraphrase The ability to grasp the consequences of accepting and of declining the suggested treatment The ability to reason. Exceptions… Depression- preferences are clouded by their mood disorder - Overriding the wishes of a seemingly capable patient who is depressed is a serious matter and is one situation in which psychiatric involvement should be sought. Cultural issues- in patients who are members of various ethnic groups, decisionmaking is customarily delegated to other family members. - most patients, at least those who have cancer, want to be informed if their illness is terminal, while family members' opinions may differ. (15) - ask patients directly whether they wish to be involved. Informed Consent- Principles How much information does the patient require? Three possible standards by which the adequacy of information provided may be judged: The professional community standard: comparisons with other physicians; established by national professional organizations. The reasonable person standard: information desired by a well-reasoning individual who is free of mental or physical illness and no conflicting interests - subjective, variable factors related to cultural and educational background. The subjective standard: requires the physician to use experience and judgment to decide - information tailored for a specific clinical situation, by the physician, leaves one open to criticism Does the patient understand the information? —ask the patient to summarize what has just been said and to correct as needed. Is there a conflict of interest? —especially if surrogate decision makers Informed consent is in place only when adequate information, adequate understanding, and lack of coercion have been verified. Incompetent patients (patients lacking decision making capacity) — patients do not lose their autonomy when they become incompetent -the medical team and persons who are well acquainted with the patient attempt to reconstruct the patient's judgment by analyzing prior statements and his or her overall values and beliefs. This is referred to as "substituted judgment." >90 percent of patients prefer that, if incapacitated, family members make medical decisions for them along with their physicians. (16) Opinions of the physician — The renewed emphasis on informed consent has created the temptation for physicians to shift the decision-making process entirely to patients or their families. This is an incorrect approach, because informed consent is a process that requires the involvement of both the patient and the health care team. It is not only acceptable but also required for the physician to render an opinion regarding what he or she believes is the proper course of action. It is unacceptable for a set of facts to be merely presented to the patient without additional professional input and advice. Decisions of this gravity are best made jointly by those who have an in-depth knowledge of the patient's wishes and philosophy combined with those who understand the details of the pertinent medical issues. Case Scenario 2 81 y/o female with advanced, widely metastatic breast cancer refractory to therapy presents in the ED with progressive SOB and debility. A two year old advanced directive exists stating her desire to “live as long as I have a meaningful quality of life and heroic measures are acceptable as long as there is a chance of recovery.” You would next: 1) Invoke her advanced directive and admit her to a general care ward for “comfort measures” only. 2) Ask the patient, “if your heart should stop or you are unable to breathe on your own, would you want us to do everything possible to get your heart started again and keep you breathing?” 3) Invoke the advanced directive and admit her to the ICU for workup and potential ventilatory support. 4) Discuss with the patient and her family their understanding of the situation, its meaning in relation to her disease process and clarify her goals of care. Advanced Directives Advanced directives direct physicians on what type of care patients do and do not want if unable to make a decision. Living Will - comes into effect when a patient is terminally ill and has less than 6 months to live. Limited by their vagueness; they do not specify what interventions are to be avoided and are generally applicable only to a dying patient. Durable Power of Attorney for Health Care – a kind of advance directive that selects a proxy decision maker- 2 types - permanent - springing DNR order Only 28% have prepared an advance directive (The George H. Gallup International Institute, Spiritual Beliefs and the Dying Process, A Report of a National Survey Conducted for the Nathan Cummings Foundation and Fetzer Institute,October 1997, p. 47). How to write an Advance Directive Use a form-from physician/health dept. Patient writes down wishes in own language By a lawyer Use software package for legal documents. Ensure state laws are followed and review with physician/lawyer, notarize, distribute to PCP/family Can be revoked verbally/in a legal document. Do Advanced Directives Make A Difference? UNC study - patients interviewed prospectively about preferences regarding aggressive measures to sustain life and then followed for six months. No significant association between patient willingness to receive aggressive Rx and whether the patients actually received aggressive Rx when they were critically ill. (17) Survey done of physicians using six hypothetical clinical scenarios. Cases contained an explicit advance directive with a potential conflict between the directive and prognosis, wishes of family/friends, or QOL. -Physicians' choices differed from the patients' stated advance directives in 65 percent of cases, suggesting that they viewed the advance directive as only part of the information needed to make treatment decisions. (18) Instructional directive — to compensate for the limitations of the original living wills. One such instrument, the Medical Directive, asks patients to decide in advance which of a dozen possible interventions they would favor in the event of any of four potential scenarios: Coma with virtually no chance of recovery Coma with a small chance of recovery, probably to an impaired state Advanced dementia plus a terminal illness Advanced dementia The interventions include cardiopulmonary resuscitation, respirator support, artificial nutrition and hydration, major surgery, dialysis, chemotherapy, minor surgery, invasive diagnostic tests, blood transfusions, antibiotics, simple diagnostic tests, and pain medications. Problems - does not address considerations that may be given to limitation of treatment, such as moderate dementia or physical frailty. - no discussion of the goal of the interventions, the directive does not allow the individual to distinguish between short-term use of an intervention for a potentially reversible illness, and long-term treatment for a chronic condition. - it is a formidable document which may be quite intimidating in an older impaired population. a randomized trial of a complex advance directive was able to demonstrate that nursing homes that used the directive had decreased hospitalization rates and lower costs. (19) Instructional directives may significantly improve the ability of hospital-based physicians to ascertain patients' preferences. (20) Values history — The values history seeks to ascertain which facets of life are most important to a given individual in the hope that this will help define how they wish to die. The questionnaire asks patients to state their religious background, their views of dependency, and attitudes towards physicians. Combined directive — Increasingly, advance-planning documents are being developed that include components of the living will, the values history, and the instructional directive, while also designating a surrogate decision-maker. A popular example is the Five Wishes, which is legally accepted in many states. DNR orders… Death - the “D” word has to come out of the closet. Instead of asking: “ if your heart stops, would you want us to start it again…,” try: “when (if) you die from this illness an attempt to resuscitate your body will happen (by default). Would you want this to occur? It may not change anything but potentially be disturbing for those caring for you and your loved ones who might witness it.” In a study of Medicare admissions to SNFs, 32% of residents had DNR directives whereas < 2% had DNH directives. Factors associated with either directive included older age, cognitive impairment, functional dependence Caucasian ethnicity, being a resident at a rural or government facility. (21) In a questionnaire study at a community cancer center – - Only 34% of patients correctly understood the meaning of DNR - 66% thought DNR was administered only to prolong life without realizing that a DNR decision would result in no intervention even in potentially reversible conditions. (22) Case Scenario A 79 y/o WM with severe COPD, CHF, CAD and A Fib is admitted to your service with LE cellulitis. He is incidentally noted to have a lump in the neck which proves to be metastatic carcinoma. MRI shows a nasopharyngeal mass. The diagnosis is communicated to him appropriately, oncology is consulted and he is scheduled for outpatient biopsy of the nasopharyngeal mass and dental extraction prior to radiation. At the time of discharge, the patient reports that his cellulitis “feels worse” after being switched to PO antibiotics and is very upset about the discharge plans and wants to fire his primary team. You will…. - Restart IV antibiotics - Request a colleague to assume care - Tell him “ there is no indication for change of therapy or continued inpatient care” - Ask him “ How do you feel about your diagnosis?” Communicating Bad News Find a quiet, private place – minimize interruption Make sure the timing is right for the patient (and that there is enough time) Give the news in person - sit close to the patient; avoid bad body language - don’t cross legs, lean forward toward the patient (+/- comforting touch) If possible (and if wanted by the patient), have support network present (family, friends) Clarify the patient’s understanding of the situation - listen to the patient. Reduce the element of shock - fire a “warning shot” - e.g., “ I’m afraid I have bad news.” Tell the truth - but give the patient a chance to indicate how much s/he wants to know - don’t force information on someone who is not ready for it. Silence is good - pause after delivering the news so that patient can absorb it and react appropriately. Cultural differences exist (e.g., in some cultures, family will control flow of information). Convey hope (if not for cure, at least for relief of pain and other symptoms and for the best possible quality of life remaining) Reassure the patient that s/he will not be abandoned! (Ptacek, JT and Eberhardt, TL Breaking Bad News: A Review of the Literature, JAMA 276: 496-502, 1996) SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer (Bailea et al. The Oncologist, Vol. 5, No. 4, 302-311, August 2000) STEP 1: S—SETTING UP the Interview Arrange for some privacy. Involve significant others. Sit down. Make connection with the patient. Manage time constraints and interruptions. STEP 2: P—ASSESSING THE PATIENT'S PERCEPTION STEP 3: I—OBTAINING THE PATIENT'S INVITATION STEP 4: K—GIVING KNOWLEDGE AND INFORMATION TO THE PATIENT STEP 5: E—ADDRESSING THE PATIENT'S EMOTIONS WITH EMPATHIC RESPONSES STEP 6: S—STRATEGY AND SUMMARY “ When you are involved in someone’s end of life care, they (the family) will never forget you…. …… do it poorly and they’ll never forgive you.” David Guidry, I ICU Nurse >> Training Housestaff on communication A self- administered questionnaire was given to 3 consecutive cohorts (1996-98) of incoming interns (n=162, n=155 U.S. graduates) of which 152 completed it. They reported very little classroom teaching, clinical observation, or clinical experience with end-of-life communication during medical school. Clinical observation and experience with caring for and communicating with dying patients were associated with greater perceived comfort and skill, whereas classroom teaching was not. (23) The Palliative Care Clinical Evaluation Exercise (CEX) is an experience based intervention to teach communication skills in giving bad news and discussing code status. It allows faculty to observe, evaluate and give feedback to housestaff in their discussions with patients and families. Completed by 44 residents at University of Pittsburg’s Categorical IM Residency program- included pre-discussion counselling, resident-patient discussion and feedback (total avg. 49.5 mins.) Self- ratings showed improvement in 1 week. (24) Case scenario A 56 y/o African-American woman is admitted with SOB. She has extensive metastatic carcinoma with an unknown primary, b/l hydronephrosis s/p nephrostomy tubes with anuric renal failure, severe acidosis, volume overload, anasarca, hyperkalemia, poor po intake, depression. Her diagnosis and prognosis are explained to her and she voices understanding. When you attempt to address objectives of care, she insists on aggressive treatment and refuses DNR orders. She develops hypotension and hypoxic respiratory failure and is intubated and started on pressors. Her daughter who is next of kin refuses to withdraw care and wants her mothers’ wishes followed. You would.. Keep her code status as full code Tell your cross cover to perform a “slow code” Declare the patient incompetent with another physician and put in place a DNR order Call an ethics committee meeting Withdrawal of Care When to withdraw? death is felt to be inevitable despite continued treatment. dysfunction in three or more organ systems persists or worsens despite active treatment At the patient’s/family’s request- when advance directives become available These decisions remain difficult because of the paucity of data on different clinical scenarios. Whatever the definition of futility used, the physicians must act as advocates for the patient. This requirement has, however, been criticized as paternalistic. The advance refusal of treatment is legally binding provided certain conditions are met. PRACTICAL CONSIDERATIONS IN TERMINATING MEDICAL TREATMENTS PRACTICAL QUESTION ANSWER Is there a legal right to refuse medical interventions? Yes, the U.S. Supreme Court declared that competent people have a constitutionally protected right to refuse unwanted medical treatments based on the 14th Amendment. What interventions can be legally and ethically terminated? Any and all interventions (including respirators, antibiotics, intravenous or enteral nutrition, and hydration) can be legally and ethically terminated. Is there a difference between No, the consensus is that there is no withholding life-sustaining important legal or ethical difference interventions and withdrawing them? between withholding and withdrawing medical interventions. Stopping a treatment once begun is just as ethical as never having started it. Whose view about terminating lifesustaining interventions prevails if there is a conflict between the patient and family? The views of a competent adult patient prevail. It is the patient's body and life. Who decides about terminating life-sustaining interventions if the patient is incompetent? If the patient appointed a proxy or surrogate decision maker when competent, that person is legally empowered to make decisions about terminating care. If no proxy was appointed, there is a legally designated hierarchy, usually (1) spouse, (2) adult children, (3) parents, (4) siblings, and (5) available relatives. Are advance care directives legally enforceable? Yes, as a clear expression of the patient's wishes they are a constitutionally protected method for patients to exercise their right to refuse medical treatments. Goldman: Cecil Textbook of Medicine, 22nd ed. Problems with withdrawal of care The referring team request continued futile therapy Explain the rationale and offer a second opinion. If conflict still remains, treatment cannot be withdrawn. The family should not be informed of a decision to withdraw that is then rescinded because of interteam conflicts. It will reduce their faith in subsequent decisions + undermine confidence in the predicted outcome. The patient's family requests continued futile therapy Guilt usually plays a part, although religious and cultural factors may also contribute. Agreement can usually be obtained by explaining the rationale again and offering a second opinion from within or outside the intensive care team. It is best not to withdraw treatment if there is conflict. However, the final decision rests with the primary care team. This underlines the need for good communication. The family requests inappropriate discontinuation of therapy The rationale behind the therapy and the reasons why continuing treatment is thought appropriate should be explained. The duty of care is to the patient, not the family. Again, a second opinion can be offered. The patient requests discontinuation of therapy Explain to the patient the rationale for the treatment and that, in the opinion of the primary team, a chance of recovery exists. It may be appropriate to offer a short term contract for treatment (for example, 48 hours then review). Ultimately, the competent patient has the right to refuse treatment even if that treatment is life saving. Case Scenario continued…. The patient in the previous case scenario goes into Ventricular Fibrillation… The daughter still wants a full code… The ethics committee is still debating the case… Would you.. Perform CPR Try a “slow code” Hold CPR and institute a 2 physician DNR order stat Call the code citing futility Futility Physicians and ethicists have argued that futile interventions can be unilaterally withdrawn or withheld by the physician because: They will not benefit the patient Requiring futile interventions to be provided despite physician objections is an abrogation of the physician's integrity or autonomy Ineffective treatments squander resources Futility can be "physiologic futility" (eg, reconnecting a severed spinal cord), nonphysiologic (or "normative") futility All judgments regarding futility are in fact probability estimates. Conflicts occur when the intervention can be justified from a physiologic basis but still will not achieve specified goals of therapy. --An example is a patient in shock and failing maximal medical therapy; cardiopulmonary resuscitation (CPR) cannot be expected to return the patient to a stable physiologic condition but, in the strictest sense, CPR is not physiologically futile because it could restore circulation, albeit temporarily. Most authors have argued that physicians should unilaterally withhold or limit CPR in such circumstances. --Such therapies carry no benefits and may often prolong the suffering of both patients and families Most cases of nonphysiologic (or "normative") futility can justify designation as such only after careful discussions with the patient or surrogate -only then can the goals of therapy be clearly understood and the risks and potential benefits assessed in the light of the patient's values and wishes. Without a thorough discussion of goals, the concept of futility may be misused and invoked by physicians because it allows them to make unilateral determinations about the appropriateness of care. Case scenario A 76 y/o WM with end stage COPD is admitted with bilateral lobar pneumonia, septic shock and goes into multi organ failure. His family decides to withdraw care and you place him on a morphine drip for comfort measures…. A medical student rounding with your team asks- “Is this euthanasia?” Euthanasia- a historical perspective Since Hippocrates, euthanasia and physician-assisted suicide have been controversial issues. 1905: bill to legalize euthanasia defeated by Ohio legislature. 1930s: similar bills defeated in the British Parliament and the Nebraska legislature. American society has deemed it inappropriate for terminally ill patients to actively seek treatment that would end their lives unless that therapy primarily serves to relieve pain. This "imaginary line" has been upheld by the United States Supreme Court, and several states have enacted legislation against physician-assisted suicide. 1997: U.S. Supreme Court stated that there is no constitutional right to euthanasia and physician-assisted suicide, but that there also is no constitutional prohibition against states legalizing these interventions. -Consequently, Oregon's legalization of physician-assisted suicide was constitutional. Voters consistently have defeated referenda to legalize physician-assisted suicide in other states, and bills have been defeated. This is the best example whereby patient autonomy has been limited by other considerations. Today, physician-assisted suicide is legal in Oregon (since enacted by state legislation in October 1997), and euthanasia and physician-assisted suicide are legal in the Netherlands. The numbers…. 60 to 70% of Americans support euthanasia and/or physician-assisted suicide for terminally ill patients who suffer intractable pain- public support declines in other circumstances. American physicians are much less likely to support euthanasia and/or physician-assisted suicide, with oncologists being even more opposed 18 to 25% of American physicians have received requests for euthanasia and/or physician-assisted suicide; 43 to 63% of oncologists have received requests. less than 5% of American physicians have performed euthanasia and/or physician-assisted suicide. Among oncologists, 4% have performed euthanasia and 11% have performed physician-assisted suicide during their careers. Dutch researchers : physician-assisted suicide causes complications in 7% of cases, and in 15% of cases, the patients did not die, awoke from coma, or vomited up the medication. In about 20% of physician-assisted suicide cases, the physician ended up injecting the patient with life-ending medication, converting physicianassisted suicide to euthanasia. These data raise serious questions about how to address complications of physician-assisted suicide when euthanasia is illegal or unacceptable. A study of Oregon's first year of legalized assisted suicide analyzed data for all terminally ill Oregon residents who received prescriptions for lethal medications (Chin et al., 1999). A total of 23 persons receiving prescriptions were reported to the Oregon Health Division; 15 died after taking the medications, six died from the underlying illnesses, and two were still alive as of January 1, 1999. The 15 assisted suicides accounted for five out of every 10,000 deaths in Oregon in 1998. Eight of the 15 were male and seven were female, and all were of European American descent. Only four of the candidates had psychological or psychiatric consultations. DEFINITIONS OF ASSISTED SUICIDE AND EUTHANASIA TERM DEFINITION Voluntary active euthanasia Intentionally administering medications or other interventions to cause the patient's death with the patient's informed consent Involuntary active euthanasia Intentionally administering medications or other interventions to cause the patient's death when the patient was competent to consent but did not (e.g., the patient may not have been asked) Nonvoluntary active euthanasia Intentionally administering medications or other interventions to cause the patient's death when the patient was incompetent and was mentally incapable of consenting (e.g., the patient might have been in a coma) Passive euthanasia Withholding or withdrawing life-sustaining medical treatments from a patient to let him or her die (terminating life-sustaining treatments) Indirect euthanasia Administering narcotics or other medications to relieve pain with the incidental consequence of causing sufficient respiratory depression to result in the patient's death Physician-assisted suicide A physician provides medications or other interventions to a patient with the understanding that the patient can use them to commit suicide Arguments for euthanasia Autonomy justifies euthanasia and physician-assisted suicide. Beneficence—sometimes, living can create more pain and suffering than death. The reassurance of having the option provides "psychological insurance“. Euthanasia and physician-assisted suicide are no different from terminating life-sustaining treatments that are recognized as ethically justified. With no difference in patient consent, physician intention, or the final result, there can be no difference in the ethical justification. The idea that permitting euthanasia and physician-assisted suicide would undermine the physician-patient relationship or lead to forced euthanasia is completely speculative and not borne out by the available data. Arguments Against Euthanasia Kant and Mill - autonomy does not permit the voluntary ending of the conditions necessary for autonomy- exercise of autonomy cannot include the ending of life because that would mean ending the possibility of exercising autonomy. Dying patients may have pain and suffering because they are not receiving appropriate care-In Oregon's first year, only 15% of patients who received physician-assisted suicide had uncontrolled pain; depression and hopelessness are the strongest predictors of interest. Clear distinction between intentionally ending a life compared with terminating lifesustaining treatments. Adverse consequences -disturbing reports of involuntary euthanasia in the Netherland - coercion of expensive/burdensome patients to accept euthanasia and/or physician-assisted suicide-legal ramifications. One study found that in 54% of euthanasia cases it was the family who made the request; in 39% of euthanasia and 19% of physician-assisted suicide cases the patient was depressed; in only half of the cases was the request repeated. Safeguards…. Euthanasia and physician-assisted suicide should be considered only after all attempts at physical and psychological palliation have failed. A series of safeguards have been developed and embodied in the Oregon and the Dutch procedures, as follows: (1) The patient must be competent and must request euthanasia and/or physicianassisted suicide repeatedly and voluntarily; (2) the patient must have pain and suffering that cannot be relieved by optimal palliative interventions; (3) there is a waiting period to ensure the patient's desire for euthanasia and/or physician-assisted suicide is stable and sincere; and (4) the physician should obtain a second opinion from an independent physician. Oregon requires patients to be terminally ill, whereas the Netherlands has no such safeguard. Although there have been some prosecutions, there have been no convictions— except for Dr. Kevorkian—when physicians and others have participated in euthanasia and/or physician-assisted suicide. Case scenario Your 54 y/o clinic patient with metastatic colon cancer has failed multiple chemotherapy regimens. She has intestinal obstruction with a G tube placed for decompression. She is admitted with acute SVC syndrome secondary to a PICC line placed for TPN. She and her family want aggressive therapy despite multiple discussions about her poor prognosis and refuse a DNR order. She and her daughter (who is a medical student) demand intra-arterial TPA and admission to the ICU and plan to start a new salvage chemotherapy regimen the following week. You feel she should be on hospice and do not agree with further aggressive treatment. Can you withdraw from her care? When can you withdraw from your role as a physician? The patient’s condition is such that care is no longer required The patient terminates the physician-patient relationship The physician agreed to only treat a specific ailment or injury; or to only treat at a specific time or place. The physician gives written notice of withdrawal of care and allows sufficient time (10-30 days) for the patient to find another doctor - you may refer the patient to another physician or to the local medical society. - advise patients with chronic conditions if they need ongoing medical attention, stress any urgency, mention medication requirements and health care recommendation. - Document, return receipt for mailed letter. When a patient dies-impact on physicians >> Seriously ill and dying persons may evoke strong emotional reactions in clinicians, thrusting them into often intense, intimate relationships at a major crisis point in the lives of patients and their families. Clinicians may report a wearying sense of grief and depletion over recurrent losses and an exhilarating sense of privilege in witnessing how some patients and families cope using extraordinary dignity, acceptance, and love. Staff support programs, which are routine aspects of most palliative care services, can help all clinicians develop and maintain a working environment that attends to emotional reactions, addresses staff conflict, and bolsters a personal capacity to deal with multiple losses without becoming hardened to suffering. The camaraderie and support that can accompany interdisciplinary teamwork is an important antidote to clinician burnout. PATIENT'S PERSPECTIVE ON A "GOOD DEATH" Control pain and other symptoms Avoid inappropriate prolongation of dying when life no longer enjoyable Relieve burden on the family Achieve a sense of control Strengthen relationships with loved ones Singer PA, Martin DK, Kelner M: Quality end-of-life care: patients' perspective. JAMA 1999;218:163–168. Goldman: Cecil Textbook of Medicine, 22nd ed “… in principle, people want a peaceful, dignified, comfortable death but … in reality, they do not want it quite yet. They prefer life-prolonging care in the hope that their peaceful, dignified, comfortable death can occur later…” (Ainslie, N. Letter to the Editor, Ann Intern Med 127: 242, 1997) Websites For patients….. 1)http://www.cancer.gov/cancertopics/factsheet/support/en d-of-life-care 2)http://www.nlm.nih.gov/medlineplus/endoflifeissues.html 3) www.partnershipforcaring.org – Forms for assignment of healthcare proxy, living will, advance directives. References 1) Tierney, WM, Dexter, PR, Gramelspacher, GP, et al. The effect of discussions about advance directives on patients' satisfaction with primary care. J Gen Intern Med 2001; 16:32. 2) Pfeifer, MP, Mitchell, CK, Chamberlain, L. The Value of Disease Severity in Predicting Patient Readiness to Address End-of-Life Issues. Arch Intern Med 2003; 163:609. 3) New Study of Patterns of Death in the United States February 23, 1998 The National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention, from the latest National Mortality Followback Survey 4) End-of-Life Care; The Hospital Physician Critical Care Medicine Board Review Manual -Critical Care Medicine Volume 7, Part 3 Ana L. Huerta-Alardín, MD, George L. Sternbach, MD, FACEP, and Joseph Varon, MD, FACP, FCCP, FCCM 5) Resuscitating Advance Directives- Bernard Lo, MD; Robert Steinbrook, MD Arch Intern Med. 2004;164:1501-1506. 6) DV, Studnicki J, Bradham DD, Wolff P, Jarrett A. Intensive care, survival, and expense of treating critically ill cancer patients. JAMA 1993; 269: 783-786 7) Wachter RM, Luce JM, Safrin S, Berrios DC, Charlebois E, Scitovsky AA. Cost and outcome of intensive care for patients with AIDS, Pneumocystis carinii pneumonia, and severe respiratory failure. JAMA 1995; 273: 230-235 8) Hofmann, JC, Wenger, NS, Davis, RB, et al. Patient preferences for communication with physicians about end-of-life decisions. Ann Intern Med 1997; 127:1.Asch, DA, HansenFlaschen, J, Lanken, PN. 9) Decisions to limit or continue life-sustaining treatment by critical care physicians in the United States: Conflicts between physicians' practices and patients' wishes. Am J Respir Crit Care Med 1995; 151:288. 10) Lee, KH, Angus, DC, Abramson, NS. Cardiopulmonary resuscitation: What cost to cheat death? Crit Care Med 1996; 24:2046.Pronovost, P, Angus, DC. 11) Economics of end-of-life care in the intensive care unit. Crit Care Med 2001; 29:N46. 12) Schneiderman, LJ, Kaplan, RM, Pearlman, RA, Teetzel, H. Do physicians' own preferences for life-sustaining treatment influence their perceptions of patients' preferences? J Clin Ethics 1993; 4:28. 13) Burstin, H, Lipsitz, SR, Brennan, TA. Socioeconomic status and risk for substandard medical care. JAMA 1992; 268:2383. 14) Blendon, RJ, Aiken, LH, Freeman, HE, Corey, CR. Access to medical care for black and white Americans. A matter of continuing concern. JAMA 1989; 261:278. 15) Yun, YH, Lee, CG, Kim, SY, et al. The attitudes of cancer patients and their families toward the disclosure of terminal illness. J Clin Oncol 2004; 22:307. 16) Puchalski, CM, Zhong, Z, Jacobs, MM, et al. Patients who want their family and physician to make resuscitation decisions for them: Observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000; 48:S84. 17) Davis, M, et.al. A Prospective Study of the Impact of Patient Preferences on Life-sustaining Treatment and Hospital Cost, Crit. Care Med. 24: 1811-1817, 1996 18) Hardin, SB, Yusufaly, YA. Difficult end-of-life treatment decisions: do other factors trump advance directives?. Arch Intern Med 2004; 164:1531. 19) Molloy, DW, Guyatt, GH, Russo, R, et al. Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 2000; 283:1437. 20) Coppola, KM, Ditto, PH, Danks, JH, Smucker, WD. Accuracy of primary care and hospitalbased physicians' predictions of elderly outpatients' treatment preferences with and without advance directives. Arch Intern Med 2001; 161:431. 21) Do-not-resuscitate and Do-not-hospitalize directives of persons admitted to skilled nursing facilities under the Medicare Benefit, Levy, Fish and Kramer, J Am Geriatr Soc. 2005 Dec; 53(12):2060-8) 22) Risk of Mistaken DNR orders Rohrer et al Support Care Cancer. 2006 Feb 9;:1-3 23) Assessing Medical students’ training in End-of-life Communication: A survey of interns at one urban teaching hospital. Wayne et al. Academic Medicine(2003) 78:530-37 24) The Palliative Care Clinical Evaluation Exercise (CEX):An experience based intervention for teaching end-of-life communication skills. Han et al, Academic Medicine (2005) 60: 669-76 25) Up To Date Discussion