Professional Documents
Culture Documents
Physicians are not ethically obligated to deliver care that, in their best professional judgment, will not have a reasonable chance of benefiting their patients. When further intervention to prolong the life of a patient becomes futile, physicians have an obligation to shift the intent of care toward comfort and closure. Withholding or withdrawing life-sustaining therapies is ethical and medically appropriate in these circumstances. Before reviewing specific treatment preferences, it is useful to ask patients about their understanding of the illness and to discuss their values and general goals of care. Attending physicians should feel free to make a referral to the specialist palliative care service if they need assistance in providing specific advice to patients and families struggling with these end-of-life decisions. Terminally-ill patients with decisionmaking capacity can opt to forego any medical intervention, including artificial nutrition/hydration and cardiopulmonary resuscitation.
Case presentation:
Mrs. S is a 42-year-old female with ovarian cancer with pulmonary metastasis. She was admitted with dehydration, weakness, and pneumonia in the immunocompromised. Her cancer treatments have failed, as she now has a recurrence. The oncologist is contemplating some new palliative chemotherapy once the pneumonia resolves. The attending physician is concerned about her cachexia and recommends total parenteral nutrition (TPN). Should the patient be started on TPN? During the patients course in the ward, the patients pneumonia progressed rapidly. The doctors anticipated that she might go into respiratory failure. Awake and alert, the patient verbally communicated to the attending physicians that she wants to die with dignity and does not want to be hooked to a respirator. However, before the patient was able to sign the advance directives, she went into respiratory distress to the point of cardiorespiratory arrest. The husband decided on and authorized a full code for her. She was subsequently resuscitated after 15 minutes, was attached to mechanical ventilation and was transferred to the ICU. What do you think is the prognosis of the patient? What else do you want to know before making the decision to withhold or withdraw ventilator support? If she was competent, will you honor her request? What if the family requests continuation of ventilator support
and other life-sustaining treatment that the health care team considers futile?
Quality of Life
Quality of life are judgments about the kind of life a patient experiences before or after the use of medical interventions. While there are disagreements about the meaning of the termeven whether or not such judgments can be made and can be made fairly and objectively or are necessarily subjective and arbitrary the concept does exist within the Catholic moral tradition. The term should not be understood, however, as evaluations of the individuals merit or moral worth. Though all human life is inherently valuable as considered in the principles of human dignity and sanctity of life, physical life is not an absolute value, but only the condition for the pursuit of higher values. In other words, purely physical life is a penultimate value, but not the ultimate value of human life (John Paul II, Evangelium vitae 2). "Quality of life judgments, then, are assessments about a patients current or future medical condition in relation to his or her abilities to pursue these other important values that transcend physical life. Any decision to use medical technology must consider whether the intervention will enhance or diminish the patients ability to pursue lifes values beyond merely physical existence" (McBrien, 1995). Quality of life considerations may be included in ones evaluation of a medical treatment as a proportionate or
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Table 1. Things to think about when considering a referral to palliative care* What are your teams plans for ongoing care? What treatment options are available? What are the patients wishes for care or place of care? If there are symptoms, what do you think is the underlying cause and what steps have already been taken to address them? If the referral is for terminal care, has your team reached a consensus that this is the aim of care? Is this reflected in the care that is being provided? Have you thought through and identified the specialist palliative care needs of your patient, e.g. difficulties of pain and symptom management, psychological and social needs and dying? Have you made sure that the patient and family are aware of and in agreement with the palliative care referral? This will usually imply a level of understanding of their illness and prognosis. * Watson et al, Oxford Handbook of Palliative Care, 2009 Many patients turn to family members, friends, or caregivers for advice. But it is the patient's decision how much or how little treatment to have (Snyder, 2012).
Palliative Care
Palliative care is both a philosophy of care and an organized highly structured system for delivering care to persons with life-threatening or debilitating illness. Palliative care is neither about shortening life nor prolonging the dying period. It is a patient and familycentered care that focuses upon effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs, and culture(s). The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease and the need for other therapies. Palliative care can be delivered concurrently with life-prolonging care or as the main focus of care. (NCCN Practice Guidelines in Oncology-v.2.2011) Although palliative care goes beyond end-of-life care, palliative care near the end of life entails addressing physical, psychosocial, and spiritual needs, and understanding that patients may at times require palliative treatment in an acute care context such as in the emergency department (ED) or in the intensive care unit (ICU) (Synder, 2012). Appropriate and timely palliative care referral is based on an understanding of the goals of care, taking into consideration the patients and familys wishes, and how the palliative care specialist can assist in achieving these goals. (Table 1).
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Advance directives should be readily accessible to health care professionals regardless of the site of care. When there is no advance directive and the patients values and preferences are unknown or unclear, decisions should be based on the patients best interests whenever possible, as interpreted by a guardian or a person with loving knowledge of the patient, if available. When making the decision to forgo treatment, many people give the most weight to reversibility of disease or dependence on life support, loss of capacity for social interaction, or nearness to death. Family members and clinicians should avoid projecting their own values or views about quality of life onto the incapacitated patient. Quality of life should be assessed according to the patients perspective (Karlawish, 1999; American Coll Physicians, 2001). The surrogate decision maker is obligated to act in accordance with patients previously expressed preferences or best interests. Some patients want their surrogates to strictly adhere to their expressed wishes. Others want their surrogates to have flexibility in decision making. Patients should specify what authority and discretion in decision making they are giving their surrogates (Snyder, 2012). Ideally, the process of discussing and writing advance directives should be ongoing, rather than a single event. Advance directives can be modified as a patient's situation changes. Even after advance directives have been signed, patients can change their minds at any time. As long as a patient remains competent to participate in medical decisions, advance directives are revocable. Informed decisions by competent patients always supersede any written directive. Advance directives are important because complex choices about end-of-life care are difficult even when people are well. If a person is seriously ill, these decisions can seem overwhelming. But patients should keep in mind that avoiding these decisions when they are well will only place a heavier burden on them and their loved ones later on. Communicating wishes about end-of-life care will ensure that people with life-limiting illness face the end of their lives with dignity and with the same values by which they have lived.
Living Will
A living will is a set of instructions documenting a person's wishes about medical care intended to sustain life. Some of the problems with most living wills include: they may be either much too specific or too vague, do not adapt to the patient's condition and are not
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A DNR order should not be suspended simply because of a change in the venue of care. When a patient with a preexisting DNR order is to undergo, for example, an operative procedure requiring general anesthesia, fiberoptic bronchoscopy, or gastroesophageal endoscopy, the physician should discuss the rationale for continuing or temporarily suspending the DNR order. A change in DNR status requires the consent of the patient or appropriate surrogate decision maker (Snyder, 2012).
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Extraordinary means usually refer to highly specialized, physically difficult, psychologically draining or very expensive measures used in order to delay the imminent death and prolong the life of the dying patient. These extraordinary means no longer correspond to the real situation of the patient, either because they are by now disproportionate to any expected results or because they impose an excessive burden on the patient and his family. Excessive burdensomeness is the genus, and species of such burdensomeness include the treatment's riskiness, its bad side-effects and bad consequences on the life of the person [e.g. it may so disable a person he is no longer able to do his job and support his family; he may have to move to a different climate, leaving home, friends, and so forth]; the excessive pain of the treatment, and excessive expense that would imperil the economic security of the patient, the patient's family, and/or the community. Withholding or withdrawing such treatments is not euthanasia or a choice to kill oneself or another for merciful reasons. One does not judge a life excessively burdensome, but rather, one judges a treatment excessively burdensome. In making this judgment, the "physical and moral resources of the patient" -- his or her "quality of life" in that sense -- can rightly be taken into account (Donovan, 2011). The criterion of usefulness judges a means as useless (in the strict sense) if the benefits it promises are nil, or useless (in a wider sense) if the benefits conferred are insignificant in comparison to the burdens it imposes. (May, 2010).
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unnecessarily prolonging their suffering, it may be removed. So, for example, in the last hours, even days, of a cancer patient's life, or if a sick person's body is no longer able to process food and water, there is no moral obligation to provide nutrition and hydration. The patient will die of their disease or their organ failure before starvation or dehydration could kill them. However, when the withdrawal of nutrition and hydration, starvation and dehydration, is the foreseeable cause of death and is intended to kill the person, or will be the immediate and direct cause of doing so, quite apart from any disease or failure of their bodies, then to withdraw food and water would be gravely immoral, a grave sin against the natural law and the law of God. However, during the last days of life, patients tend naturally to take in less and less food and fluid. Hunger is rare in the last days of life. Thirst occurs more commonly, but without relation to dehydration, and can usually be controlled by simple measures (e.g., moistening the lips, giving small sips of fluids or small amounts of crushed ice to suck). Enteral feeding should be stopped when the patient can no longer swallow reliably. In most cases, parenteral (IV) fluids should not be given in the last hours of life. Allowing the patient to become slightly dehydrated may prevent or ameliorate many otherwise distressing problems in the last hours. Imminently dying patients may develop fluid overload as their kidneys stop functioning, with peripheral and pulmonary edema; continued administration of intravenous fluids exacerbates these symptoms and may cause substantial distress. Physicians should address these issues with patients and loved ones involved in providing care. (Waller, 1996).
Futile Treatments
Futility refers to the benefit of a particular intervention for a particular patient. With futility, the central question is "Does the intervention have any reasonable prospect of helping this patient?" (Jecker, 1998). In the circumstance that no evidence shows that a specific treatment desired by the patient will provide any medical benefit, the physician is not ethically obliged to provide such treatment (although the physician should be aware of any relevant state law) (Snyder, 2011). Futile interventions are ill advised because they often increase a patient's pain and discomfort in the final days and weeks of life, and because they can expend finite medical resources. Although the ethical requirement to respect patient autonomy entitles a patient to choose from among medically acceptable treatment options (or to reject all options), it does not entitle patients to receive
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whatever treatments they ask for. Instead, the obligations of physicians are limited to offering treatments that are consistent with professional standards of care. The ethical authority to render futility judgments rests with the medical profession as a whole, not with individual physicians at the bedside. Thus, futility determinations in specific cases should conform with more general professional standards of care. (Jecker, 1998). The physician need not provide an effort at resuscitation that cannot conceivably restore circulation and breathing, but he or she should help the family to understand and accept this reality. The more common and much more difficult circumstance occurs when treatment offers some small prospect of benefit at a great burden of suffering or financial cost, but the patient or family nevertheless desires it. If the physician and patient (or appropriate surrogate) cannot agree on how to proceed, there is no easy, automatic solution. Consultation with learned colleagues or an ethics consultation may be helpful in ascertaining what interventions have a reasonable balance of burden and benefit. (Snyder, 2012). In some instances, it may be appropriate to continue temporarily to make a futile intervention available in order to assist the patient or family in coming to terms with the gravity of their situation and reaching a point of personal closure. For example, a futile intervention for a terminally ill patient may be continued temporarily in order to allow time for a loved one arriving from another country or place to see the patient for the last time (Jecker, 1998).
Suicide,
and
Ventilator Withdrawal in Patients Expected to Die Discussing ventilator withdrawal to allow death is appropriate once it is decided that further aggressive medical care is incapable of meeting the desired goals of care for a ventilator-dependent patient. All members of the care team should be involved and apprised of the decision-making process and have the opportunity to discuss the plan of care. The most common symptoms related to ventilator withdrawal are breathlessness and anxiety. Opioids and benzodiazepines are the primary medications used. Concerns about unintended hastened death are exaggerated, particularly if established dosing guidelines are followed. There is no medical or ethical justification for withholding sedating medication when death following ventilator withdrawal is the expected goal. However, increasing doses beyond the levels needed to achieve
Euthanasia consists of an act or omission which, of itself or by intention, causes death in order to eliminate suffering. It constitutes a murder gravely contrary to the dignity of the human person and to the respect due to the living God, his Creator. The death caused by euthanasia is not part of the natural process of dying of a terminally ill person. Whatever its motives and means, direct euthanasia consists in putting an end to the lives of handicapped, sick, or dying persons. It is morally unacceptable. (Catechism of the Catholic Church, 2277) Euthanasia is killing on request and is defined as a doctor intentionally killing a person by the administration of drugs, at that persons voluntary and competent request. Physician-assisted suicide is defined as a doctor intentionally helping a person to commit suicide by providing drugs for self-administration, at that persons voluntary and competent request (Materstvedt et al, 2003).
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Abuse of palliative sedation occurs when clinicians sedate patients approaching the end of life with the primary goal of hastening the patients death (Onwuteaka-Philipsen et al, 2003; Rietjens et al, 2004; Douglas et al, 2001; Kuhse et al, 1997). This has been called slow euthanasia. Indeed, some physicians administer doses of medication, ostensibly to relieve symptoms, but with a covert intention to hasten death. This may occur by the deliberate use of deep sedation in patients who have no refractory symptoms, or in the deliberate use of doses that far exceed that which is necessary to provide adequate comfort. Excess doses can compromise physiological functions such as spontaneous respiration and hemodynamic stability. These duplicitous practices represent an unacceptable, and often illegal, deviation from normative ethical clinical practice.
The Use of Painkillers That May Shorten the Life of a Terminally-ill Patient
The use of painkillers to alleviate the sufferings of the dying, even at the risk of shortening their days, can be morally in conformity with human dignity if death is not willed as either an end or a means, but only foreseen and tolerated as inevitable. Palliative care is a special form of disinterested charity. As such it should be encouraged (Catechism of the Catholic Church, 2279) It is licit to relieve pain by narcotics, even when the result is decreased consciousness and a shortening of life, "if no other means exist, and if, in the given circumstances, this does not prevent the carrying out of other religious and moral duties." In such a case, death is not willed or sought, even though for reasonable motives one runs the risk of it: there is simply a desire to ease pain effectively by using the analgesics which medicine provides. (John Paul II, Evangelium Vitae, 65)
Disorders of Consciousness
There are a variety of disorders of impaired consciousness with variable prognoses, including coma, persistent and permanent irreversible vegetative states (wakeful unresponsiveness), and the minimally conscious state (The Multi-Society Task Force on PVS, 1994). Diagnostic clarity in determining the patients brain state by clinicians qualified to make such assessments before making ethical judgments about appropriate care is critical (Fins and Plum, 2004). Goals of care as decided by the patient in advance or by an appropriate surrogate should guide decisions about treatment for these patients as for other patients without decision-making capacity. John Paul II (2004) stated that
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Table 2. Typical Legal and Ethical Concerns Attending Physicians May Have Regarding the Withholding or Withdrawing of Potentially Life-Sustaining Treatments* Are physicians legally required to provide all life-sustaining measures possible? No. To the contrary, patients have a right to refuse any medical treatment, even life-sustaining treatments such as mechanical ventilation, or even artificial hydration and nutrition. Is withdrawal or withholding of treatment equivalent to euthanasia? No. There is a strong general consensus that withdrawal or withholding of treatment is a decision that allows the disease to progress on its natural course. It is not a decision to seek death and end life. Euthanasia actively seeks to end the patient's life. Can the treatment of symptoms constitute euthanasia? No. For patients who have been using opioids for pain, it is very difficult to give such high doses that death is caused or even hastened in the absence of a disease process that is leading to imminent death. Patients tend to sleep off the effect if they receive too much medication. However, in the rare circumstance when opioids might contribute to death, provided the intent was genuinely to treat the symptoms, then opioid use is not euthanasia. Is it illegal to prescribe large doses of opioids to relieve pain, breathlessness or other symptoms? No. Even very large doses of opioids (thousands of milligrams per day) are permitted and appropriate, if the intent and doses given are titrated to the patient's needs. Are you killing the patient when you remove the ventilator and treat the pain? No. The intent and sequence of actions are important, as are the means chosen. If the intent is to secure comfort, not death; if the medications are chosen for and titrated to the patient's symptoms; if the medications are not administered with the primary intent to cause death, then ventilator withdrawal and pain treatment are not euthanasia.
* From Education for Physicians on End-of-Life Care Trainer's Guide, Module 11, withholding, withdrawing therapy. In: Emanuel
LL, von Gunten C J, Ferris FD. Education for physicians on end-of-life care/Institute for Ethics at the American Medical Association. Chicago, IL: EPEC Project, The Robert Wood Johnson Foundation, 1999
the sick person in a vegetative state, awaiting recovery or a natural end, still has the right to basic health care (nutrition, hydration, cleanliness, warmth, etc.), and to the prevention of complications related to his/her confinement to bed. He/she also has the right to appropriate rehabilitative care and to be monitored for clinical signs of eventual recovery.
Clinical Practicalities
Going back to the case presented at the beginning of this article, the attending physician should carefully evaluate the goals of therapy as they relate to TPN. Is TPN likely to offer the patient any benefit? If the patients life expectancy can be prolonged with additional chemotherapy, it may be reasonable to give TPN to allow the patient to enjoy that benefit. If additional chemotherapy offers no substantial increase in quantity or quality of life, TPN could become another burden for the patient without any meaningful benefit, and ought to be withheld. Advance directives should be discussed and signed by terminally-ill patients themselves before an acute crisis. The prognosis of full recovery from mechanical ventilation in this case is poor, particularly as Mrs. S went into cardiorespiratory arrest and was resuscitated after 15 minutes. The approach to the patients request to withhold life-sustaining treatment should start with an evaluation of her decision making capacity. Even though she was awake and alert, the attending physician should carefully probe the reasons for her request, with particular
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References:
1. Ackermann, R.J. (2000). Withholding and Withdrawing Life-Sustaining Treatment. Am Fam Physician. 62(7):1555-1560. 2. American Coll Physicians.(2001). Living with a serious illness: talking with your doctor when the future is uncertain. Patient Education and Caring: End-of-Life (PEACE) series. Philadelphia. Retrieved April 23, 2012, from the American College of Physicians Web site: www.acponline.org/patients_families/end_of_life_issues/ peace/. 3. Ascension Health (2012). Quality of life. Retrieved April 23, 2012, from http://www.ascensionhealth.org/index.php?option=com_c ontent&view=article&id=197&Itemid=172. 4. Braddock, C.H. (1998). Termination of Life-Sustaining Treatment. Retrieved April 23, 2012 from the University of Washington School of Medicine Web site: Retrieved April 23, 2012 from the University of Washington School of Medicine Web site: http://depts.washington.edu/bioethx/topics/termlife.html 5. Catholic Church. (1997). Catechism of the Catholic Church: Revised in Accordance with the Official Latin Text Promulgated by Pope John Paul II. Vatican City: Libreria Editrice Vaticana. Retrieved April 23, 2012, from the Vatican Web site: http://www.vatican.va/archive/ccc_css/archive/catechism/ p3s2c2a5.htm 6. Cherny NI, Radbruch L, The Board of EAPC. (2009). European Association for Palliative Care (EAPC) recommended framework for the use of sedation in palliative care. Palliat Med, 23:581-593. 7. Donovan, C.B. (2011). End-of-Life Decisions. Retrieved April 23, 2012, from the Eternal Word Television Network Web site: http://www.ewtn.com/morals/end-oflife.htm 8. Douglas CD, Kerridge IH, Rainbird KJ, McPhee JR, Hancock L, Spigelman AD. (2001). The intention to hasten death: a survey of attitudes and practices of surgeons in Australia. Med J Aust. 175: 511515. 9. Doyle, D., Hanks, G., MacDonald, N. (2005). Oxford textbook of palliative medicine. Oxford: Oxford University Press 10. Emanuel LL, von Gunten CF, Ferris FF, eds. (1999). Module 11: Withholding and Withdrawing Therapy. The EPEC Curriculum: Education for Physicians on End-of-life Care. Chicago, IL: The EPEC Project. http://www.EPEC.net. 11. Fins JJ, Plum F. (2004). Neurological diagnosis is more than a state of mind: diagnostic clarity and impaired consciousness [Editorial]. Arch Neurol. 61: 1354-5. 12. Jecker, N.S. (1998). Futility. Retrieved April 23, 2012 from the University of Washington School of Medicine Web site: http://depts.washington.edu/bioethx/topics/futil.html
Conclusion
The many advances in medicine during recent decades had saved many people who would simply have been allowed to die in the past. Further, having saved them, many people continue to live for long periods in comatose or semi-conscious states, unable to live without technological assistance of one kind or another. In the wards, doctors would have patients who are receiving treatments or interventions that keep them alive, and the attending physicians face the challenge of helping patients and families decide whether to undergo or forego medical treatments. In some circumstances, these treatments are no longer of benefit, while in others the patient or family no longer want them. Making and implementing decisions about life-sustaining treatments are essential skills for attending physicians. Good care is based on an understanding of the ethical and medico-
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13. John Paul II (2004). Life-Sustaining Treatments and Vegetative State: Scientific Advances and Ethical Dilemmas. Retrieved from the Vatican Web site: http://www.vatican.va/holy_father/john_paul_ii/speeches/ 2004/march/documents/hf_jp-ii_spe_20040320_congressfiamc_en.html 14. John Paul II. (1995). Evangelium vitae. Retrieved April 23, 2012, from the Vatican Web site: http://www.vatican.va/holy_father/john_paul_ii/encyclica ls/documents/hf_jp-ii_enc_25031995_evangeliumvitae_en.html 15. Karlawish JH, Quill T, Meier DE. (1999). A consensusbased approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-ofLife Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med. 130:835-40. 16. Kuhse H, Singer P, Baume P, Clark M, Rickard M. (1997). End-of-life decisions in Australian medical practice. Med J Aust; 166: 191196. 17. Materstvedt, L.J., Clark, D., Ellershaw, J., Frde, R., Boeck Gravgaard, A.M., Mller-Busch, H.F., Porta i Sales, J., Rapin, C.H. (2003). Euthanasia and physicianassisted suicide: a view from an EAPC Ethics Task Force Palliat Med 17: 97-101. 18. May,W.E. (2010). Catholics and "Do-Not-Resuscitate" Orders: The Moral Principles Behind Its Ethical Use. Available at: http://www.zenit.org/article30838?l=english. 19. McBrien, R.P. (ed.). (1995). Encyclopedia of Catholicism. New York: HarperCollins Publisher, Inc. 20. National Comprehensive Cancer Network. (2012). Palliative Care. Retrieved April 23, 2012, from http://www.nccn.org/professionals/physician_gls/pdf/palli ative.pdf 21. Onwuteaka-Philipsen BD, van der Heide A, Koper D, Keij-Deerenberg I, Rietjens JA, Rurup ML, et al. (2003). Euthanasia and other end-of-life decisions in the Netherlands in 1990, 1995, and 2001. Lancet. 362(9381):395-9. 22. Rietjens JA, van der Heide A, Vrakking AM, OnwuteakaPhilipsen BD, van der Maas PJ, van der al G. (2004). Physician reports of terminal sedation without hydration or nutrition for patients nearing death in the Netherlands. Ann Intern Med. 141: 178185. 23. Sacred Congregation for the Doctrine of Faith. (1980). Declaration On Euthanasia. Retrieved April 23, 2012, from the Vatican Web site: http://www.vatican.va/roman_curia/congregations/cfaith/ documents/rc_con_cfaith_doc_19800505_euthanasia_en. html 24. Scholl Institute (2005). Bioethics Review: Advance directives. Retrieved April 23, 2012 from http://www.crusadeforlife.org/advanced directive.pdf 25. Snyder, L. for the American College of Physicians Ethics, Professionalism and Human Rights Committee. (2012). American College of Physicians Ethics Manual: Sixth Edition. Ann Intern Med. 156:73-104.