Prayers For Healing – Temple Solel
Recuperating from illness or those who are critically or terminally ill. some suggestions of prayers and Psalms that may be recited PRAYERS Prayer comes in many different forms. of Beslov as having special power to bring a true and complete healing. Ten Jewish spiritual leaders have … Document Retrieval
A Time To Mourn P Columns – Temple Isaiah
A TIME TO MOURN A Guide to Funeral Practice and Mourning The first edition of this guide was prepared by Rabbi Cary David Yales, z”l, in 1999. While the traditions of Jewish mourning have, of The terminally ill especially need and want the caring expression of loved ones and … Read More
The Audaciity Of Jewish Zionist False Flag And Deception …
“So let us fight together with Israel, with our Zionist brothers against all anti-Zionists” p. 1166, “A European Declaration of Independence” by Anders Breivik Motto of the Mossad: ‘By way of deception, thou shalt do war!’ “Israel may have the right to put others on trial, but … View Video
Death & Mourning 2007 – Temple Solel
Jewish Path for Death and Mourning a special prayer of healing, is said for those who are ill. If you know of someone who is ill, you may add his/her name to this list by calling the Temple offi ce. Visiting the Terminally Ill … Get Content Here
Top 9 Gifts For People With Cancer – About.com Health
Try one of the gifts on this list; it is a compilation of gifts any cancer patient would love! Need gift ideas for a friend or family member with cancer? Try one of the gifts on this list; it is a compilation of gifts any cancer patient would love! About.com. Food; Health; Home; Money; … Read Article
Alliance Community Hospital – Prayer Shawl Program – youtube.com
Alliance Community Hospital has developed an incredible program through which terminally or gravely ill patients are able to receive a prayer shawl upon requ Alliance Community Hospital has developed an incredible program through which terminally or gravely ill patients are able to … View Video
MUSLIM – Advocate Health Care
Muslims are expected to seek God’s help with patience and prayer, increase the remembrance of God to obtain peace, Jewish Kosher meals or terminally ill patient, making sure he/she is pain-free, have his/her relatives and friends … View This Document
Prayer – Wikipersson.wikispaces.com
It sums up the essence of Jewish faith in its power the opening verse of Shema is the most important part of this most important prayer. impresses itself onto that tiny consciousness, never to be erased, and is traditionally the last words uttered by a terminally ill Jew on his or … Doc Retrieval
Jewish Views On Suicide – Wikipedia, The Free Encyclopedia
Or the desire of insurance companies to spend as little money as possible on the terminally ill.” The paper says the proper response to severe pain is not suicide, but better pain control and more pain there is even a prayer in the Jewish liturgy for “when the knife is at the … Read Article
terminallyillgenroi.blogspot.com
CHAPTER 8 CARING FOR SEVERELY ILL PATIENTS page 153 The debate about euthanasia and assisted suicide has highlighted pervasive and serious shortcomings in the care of terminally ill and chronically ill patients. These patients, as well as others who experience pain and suffering, often receive inadequate relief from pain and other debilitating symptoms despite the fact that effective treatments are available.(1) In addition, many physicians fail to discuss treatment options and the possibility of forgoing treatment with patients in a timely and appropriate manner, leading to overtreatment and a sense of isolation and powerlessness on the part of patients and those close to them. The Task Force believes that improving care for terminally and severely ill patients is critically important. It is crucial not just as a response to those who seek assisted suicide and euthanasia, but as a basic obligation to all patients whose pain and suffering could be alleviated with responsible medical care. The Task Force's recommendations for improving the provision of pain relief and care for severely ill patients are set forth below. Decisions About Life-Sustaining Treatment Patients' participation in treatment decisions contributes to their sense of self and well-being. Physicians should seek patients' participation in decisions about withdrawing or withholding life-sustaining treatment early enough in the course of illness to give patients a meaningful opportunity to have their wishes and values respected. Competent adults have a firmly established legal right to decide about treatment. Unfortunately, this right often is not realized in clinical practice, leaving patients feeling helpless and fearful about the dying process. Advance planning and discussion about treatment alternatives is the best way to give patients greater control over the course of their treatment. ---------------------------------------------------------------------- (1) See chapter 3. page 154 WHEN DEATH IS SOUGHT When health care professionals engage in a dialogue with patients about treatment, they manifest respect and care for patients and enhance patients' sense of dignity and self-worth. In addition, patients' participation in the decision-making process fosters decisions that promote their interests and personal values, enabling them to guide their course of treatment and to refuse unwanted medical interventions.(2) Advance planning for decisions about life-sustaining treatment is especially important. In addition to giving patients a greater role in the treatment process, advance discussions about life-sustaining treatment offer health care professionals the opportunity to assure patients that they will continue to receive care to alleviate pain and maximize their quality of life, even if they decide to forgo life-sustaining measures or aggressive medical treatments. Two types of advance directives are widely used: a living will, which specifies treatment wishes, and a health care proxy, which appoints someone (an "agent") to decide about treatment on the patient's behalf.(3) Given the difficulties of anticipating in advance the patient's medical condition and treatments that will be available at some future time, the Task Force on Life and the Law strongly endorses the health care proxy as the better approach.(4) Individuals can leave treatment instructions to guide their health care agent, but they are not required to do so. However, all those who sign a health care proxy should be encouraged to discuss their treatment goals and general preferences with their agent. When advising patients, health care professionals should also stress that the proxy is not just a way to refuse treatment, but a way to choose ------------------------------------------------------------------------ (2) See, e.g., New York State Task Force on Life and the Law, When Others Must Choose: Deciding for Patients Without Capacity (New York: New York State Task Force on Life and the Law, 1992); President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (Washington: U.S. Government Printing Office, 1983); R. R. Faden and T. L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986); E. D. Pellegrino and D. C. Thomasma, For the Patient's Good (New York: Oxford University Press, 1988). (3) For discussion of law on advance directives see chapter 4, pp. 50-52. (4) New York State 'Task Force on Life and the law, Life-Sustaining Treatment: Making Decisions and Appointing a Health Care Agent (New York: New York State Task Force on Life and the Law, 1987); T. E. Miller, "Public Policy in the Wake of Cruzan: A Case Study of New York's Health Care Proxy Law," Law, Medicine and Health Care 18 (1990): 360-67. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 155 someone the patient trusts to consent to treatment and decide about the course of treatment in consultation with physicians. The majority of patients and the public are already convinced about the importance of advance planning for medical decisions.(5) Studies consistently show that patients would like to discuss life-sustaining treatment and advance directives with their physician. Furthermore, many patients expect their physician to initiate the conversation. Relatively few patients, however, have actually discussed life-sustaining measures with their doctor.(6) Physicians are often reluctant to discuss life-sustaining treatment or advance directives with patients, and wait for patients to raise the issue. This failure to talk with patients appears to stem from diverse reasons. These include unjustified concerns by some physicians that the discussion itself will harm the patient, discomfort and lack of experience in talking about dying, and a failure to recognize the conversation as an integral part of caring for dying and severely ill patients. However, studies show that patients do not respond negatively to discussions about forgoing treatment or advance directives, nor do they experience an increased sense of anxiety or depression.(7) In fact, many patients are relieved to discuss the topic, even if they find the conversation difficult. Some physicians do not talk with patients about treatment wishes or advance directives because of a paternalistic belief that physicians can best determine the course of treatment. However, decisions about which treatments would be worthwhile or unacceptably burdensome reflect deeply held personal preferences and values. ----------------------------------------------------------------------- (5) L. L. Emanuel et al., "Advance Directives for Medical Care - A Case for Greater Use," New England Journal of Medicine 324 (1991): 889-95. (6) E. R. Gamble, P. J. McDonald, and P. R. Lichstein, "Knowledge, Attitudes, and Behavior of Elderly Persons Regarding Living Wills," Archives of Internal Medicine 151 (1991): 277-80; B. Lo, G. A. McLeod, and G. Saika, "Patient Attitudes to Discussing Life-Sustaining Treatment," Archives of Internal Medicine 146 (1988): 1613-15; T. E. Finucane et al., "Planning with Elderly Outpatients for Contingencies of Severe Illness," Journal of General Internal Medicine, 3 (1988): 322-35; R. H. Shmerling et al., "Discussing Cardiopulmonary Resuscitation: A Study of Elderly Outpatients," Journal of General Internal Medicine 3 (1988): 317-21; J. S. flaas et al., "Discussion of Preferences for Life-Sustaining Care by Persons with AIDS Predictors of Failure in Patient- Physician Communication," Archives of Internal Medicine 153 (1993): 124148; Emanuel et al. (7) P. Cotton, "Talk to People About Dying - They Can Handle It, Say Geriatricians and Patients," Journal of the American Medical Association 269 (1993): 321-22-1 1,0, McLeod, and Saika. page 156 WHEN DEATH IS SOUGHT Studies have shown that physicians' judgements are influenced by their own personal views about the value of life with mental or physical impairment.(8) More generally, physicians are often poor judges of the choices that patients would make for themselves. In several studies, physicians fared no better than chance alone at predicting their patients' wishes about treatment.(9) Talking to patients about forgoing treatment and advance planning should be understood as an essential part of medical care. Ideally these conversations should take place within the context of an ongoing patient-physician relationship, beginning when patients are healthy. In general, patients would prefer to talk with their physician about advance directives as part of a routine office visit in advance of illness.(10) The Patient Self-Determination Act, which requires health care facilities to inform patients about their right to decide about treatment and to prepare advance directives, also presents an opportunity to discuss advance planning as a routine matter. In New York State, all patients admitted to a hospital, nursing home, or mental health facility, as well as those enrolled in numerous outpatient settings, must receive a copy of the health care proxy form. The health care proxy can serve as a springboard for a dialogue between physicians and their patients. Physicians should talk about treatment options and facilitate advance planning as soon as possible after serious illness has been diagnosed if the discussion has not occurred earlier. Unfortunately, physicians often wait until the end stages of illness to talk about withdrawing or withholding treatment.(11) This is too ------------------------------------------------------------------------ (8) N. J. Farber et al., "Cardiopulmonary Resuscitation (CPR): Patient Factors and Decision Making," Archives of Internal Medicine 144 (1984): 2229-32; L. J. Schneiderman et al., "Do Physicians' Own Preferences for Life-sustaining Treatment Influence Their Perceptions of Patients' Preferences?" Journal of Clinical Ethics 4 (1993): 28-33. (9) R. F. Uhlmann, R. A. Pearlman, and K, C. Cain, "Physicians' and Spouses' Predictions of Elderly Patients' Resuscitation Preferences," Journal of Gerontology 43 (1988): M115-21; J. Oustander, A. Tymchuk, and B. Rahbar, "Health Care Decisions Among Elderly Long-Term Care Residents and Their Potential Proxies," Archives of Internal Medicine 149 (1989): 1367-72. (10) Shmerling et al., 317-21; Finucane et al., 322-35. (11) For example, a review of patient deaths over two months at a major center for cancer treatment in New York City showed that while DNR orders had been entered for 86% of patients who died of cancer and all patients who died of AIDS, many orders had been entered in the last days of life. The median interval between entry of the DIR order and death was only six days, despite the fact that treatment for cancer and AIDS usually offers an extended opportunity to discuss treatment options with patients. R. I. Misbin et al., "Compliance with New York State's Do-Not-Resuscitate Law at Memorial Sloan-Kettering Cancer Center: A Review of Patient Deaths," New York State Journal of Medicine 93 (1993): 165-68. A study at a university hospital in Massachusetts of 389 patients with a DNR order who had a cardiac arrest found that 76% of patients lacked decision-making capacity when the order was entered, even though only 11% lacked capacity when admitted to the hospital. S. E. Bedell et al., "Do- Not-Resuscitate Orders for Critically Ill Patient-, in the Hospital: How Are They Used and What Is Their Impact?" Journal of the American Medical Association 256 (1986): 233-37. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 157 late --many patients lose decision-making capacity as their illness progresses. The discussion may also be more threatening to some patients if delayed too late in the course of illness. Physicians should discuss treatment decisions at a time that is sensitive to patients' needs, and early enough to give patients a meaningful opportunity to think about and express their wishes or appoint someone they trust to act as their health care agent. Talking to patients about advance decisions, illness, and dying should be addressed in medical education at all stages of training and practice. A 1987 conference on the intellectual basis of medicine and its future called for significant changes in the medical school curriculum, decrying the failure of medical schools to train doctors adequately to conduct a medical interview and to talk to patients.(12) According to the American Medical Association (AMA), only three of 126 accredited medical schools in the United Sates require a class about death and dying.(13) At its 1993 annual meeting, the AMA adopted a resolution calling for a curriculum on "end-of-life care" for medical schools and residencies. Recently developed courses for medical students and residents include role playing, group discussions, and individual conversations with dying patients.(14) Health care providers and other segments of society should also conduct public education about advance directives. Physicians are most directly responsible for informing their patients. Other health care professionals can also assist patients to learn about these options. Organizations outside the health care setting should ------------------------------------------------------------------------ (12) The conference report described a "persistent inability or unwillingness on the part of what is alleged to be a majority of physicians to converse, to listen, to try to understand, to learn about the patient's 'lifeworld,' the natural history of the illness and the search for help, and about the circumstances under which the illness arose and the meaning to the individual of his or her symptoms and illness. If this is not a medical disgrace, it must be close to it. Indeed, lack of interviewing and communication skills is probably the root cause of our malaise vis-a-vis the public and our patients." K. L. White, The Task of Medicine (Menlo Park, Cal.: The Henry J. Kaiser Family Foundation, 1988),33. (13) B. Clements, "Final Journey,"American Medical News, August 16,1993,9-12. (14) Ibid. page 158 WHEN DEATH IS SOUGHT contribute to public education; diverse groups in New York State now distribute information about advance directives and sample forms, including Choice in Dying, the American Association of Retired Persons, the New York State Catholic Conference, and Agudath Israel. The Task Force and the New York State Department of Health have distributed tens of thousands of health care proxy forms. Social groups, religious congregations, and community organizations should also sponsor discussions about treatment decisions and encourage advance planning. Improving Palliative Care Health care professionals have a duty to offer effective pain relief and symptom palliation to patients when necessary, in accord with sound medical judgment and the most advanced approaches available. Alleviation of pain and the symptoms of illness or disease makes a powerful contribution to the patient's quality of life. It can also speed recovery and provide other tangible medical benefits.(15) Physicians and nurses have an ethical and professional responsibility to offer effective pain and symptom management. This responsibility must be understood as central to the art of medicine and the delivery of medical care.(16) Attention to patients' symptoms should not be reserved for the end of life, nor should it be a sign that curative efforts have been abandoned. Palliative care should be understood to include symptom control at all stages of disease. The failure to provide pain relief is a pervasive fault of current clinical practice. It is also one of the most amenable to change. Physicians and nurses who care for terminally ill patients have a special responsibility to develop the ability to provide effective pain and symptom management. Hospitals and other health care facilities must create an environment in which patients and ------------------------------------------------------------------------ (15) Acute Pain Management Guideline Pane, Acute Pain Management: Operative or Medical Procedures and Trauma, Clinical Practice Guideline, AHCPR pub no. 92-0032 (Rockville Md: Agency for Health Care Policy and Research, U.S. Department of Health and Human Services, Feb. 1992), 5-6. (16) See American Medical Association, Council on Ethical and Judicial Affairs, "Decisions near the End of Life," Journal of the American Medical Associaltion 267 (1992): 2231. The American Nursing Association states; "The main goal of nursing intervention for dying patients should be maximizing comfort through adequate management of pain and discomfort as this is consistant with the expressed desires of the patient." "Position Statement on Promotion of Comfort and Relief of Pain in Dying Patients," 1991. See also R.S. Smith, "Ethical Issues Surrounding Cancer Pain," in Current and Emerging Issues in Cancer Pain: Research and Practice, ed. C.R. Chapman and K.M. Foley (New York: Raven Press,1993), 385-92. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 159 health care professionals regard pain relief as a priority of medical care. Skill in prescribing and administering medications is essential for palliative care, but it is not sufficient. In order to assess pain, the symptoms caused by illness, and the side effects of treatment, health care professionals must communicate with patients and listen carefully to their needs. A patient's personal and social outlook as well as the pathological processes of disease will affect the patient's experience of pain. Caring, communication, and support are important to patients in any state of health or illness. For terminally and chronically ill patients, they are especially vital. For these patients in particular, physicians and nurses must seek to provide comprehensive continuing care: "a system of intensive and flexible care, focusing on symptom management, pain control, and the changing psychological and social state of the .. patient and family."(17) Pain relief is one of the first elements that should be addressed in the continuing care of a patient.(18) It is also a logical focus for society's initial efforts to improve palliative care. The effective implementation of existing clinical knowledge and programs for pain management is almost certain to have an immediate impact on relieving suffering. At the same time, pain relief should not be seen as a technical panacea, sufficient to respond to the suffering of all patients. Pain relief is one discrete aspect of a larger problem. The ways in which the health care system treats patients and responds to their suffering and despair more generally must also be improved, although these are admittedly broader and less concrete goals. ------------------------------------------------------------------------ (17) N. Coyle, "Continuing Care for the Cancer Patient with Chronic Pain," in Why Do We Care?, Syllabus of the Postgraduate Course, Memorial Sloan-Kettering Cancer Center, New York City, April 24, 1992, 371. (18) V. Ventafridda, "Continuing Care: A Major Issue in Cancer Pain Management," Pain 36 (1989): 138. page 160 WHEN DEATH IS SOUGHT Physicians and nurses must be aware that psychological dependence on pain medication rarely occurs in terminally ill patients. While physical dependence is somewhat more common, proper adjustment of medication can minimize any negative effects. Concerns about psychological or physical dependence should not prevent patients from receiving appropriate palliative treatments. Failure to provide adequate pain relief stems from diverse causes. One significant reason for the inadequacy of current practices is that health care professionals are ill-informed about and overly fearful of addiction. These fears are often shared by patients and family members, making them reluctant to seek pain relief. Palliative care experts stress the importance of distinguishing among tolerance, physical dependence, and psychological dependence on drugs. Tolerance and physical dependence are both common physiological responses to prolonged administration of a medication such as morphine. If tolerance develops, a patient requires larger or more frequent doses to achieve the same level of analgesia. In most cases, a patient's need for increased amounts of opioids reflects increasing pain from the progression of the disease, not ongoing exposure to opioids. If physical dependence occurs, the dosage of opioids must be reduced gradually to avoid symptoms of withdrawal when the patient no longer requires pain medication.(19) Health care professionals who are aware of these phenomena can adjust medication to provide adequate pain relief while minimizing and managing side effects. Neither tolerance nor physical dependence should prevent patients from receiving needed pain medication. Both tolerance and physical dependence are distinct from psychological dependence, or addiction. Patients receiving opioid medications to relieve pain almost never develop psychological dependence.(20) In fact, they display responses to opioids that differ markedly from those of people who abuse such drugs for "recreational" or nonmedical purposes.(21) Psychological dependence ------------------------------------------------------------------------- (19) American Pain Society, Principles of Analgesic Use in the Treannent of Acute Pain and Cancer Pain, 3d ed. (Skokie, Ill.: American Pain Society, 1992), 25-26. (20) 0ne study of over 10,000 patients without a prior history of substance abuse who received opioids to treat pain revealed only four documented cases of psychological dependence; another study of similar size reported no such cases. R. K. Portenoy, "Chronic Opioid Therapy in Nonmalignant Pain," Journal of Pain and Symptom Management 5 (1990): S55. (21) K. M. Foley, "The Relationship of Pain and Symptom Management to Patient Requests for Physician-Assisted Suicide," Journal of Pain and Symptom Management CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 161 can represent a significant issue for one group of patients --those who have a history of substance abuse. Nonetheless, steps can be taken to minimize the risk of psychological dependence with these patients.(22) Even if the risk of psychological dependence were much higher than it actually is, opioid medications would still be appropriate therapy for some patients suffering significant pain, especially those who are terminally ill. For most patients, opioids such as morphine represent the most effective means to relieve severe pain. While psychological dependence would be an unwelcome side effect, it would not outweigh the benefits these medications can provide for terminally ill patients. Health care professionals must be educated about both the rarity of psychological dependence and the vital importance of palliation for patients in severe pain.(23) Misunderstanding about the risk of addiction, and corresponding reluctance to provide pain medication, deny patients needed and appropriate therapy. Many patients and family members also have an exaggerated sense of the likelihood of "addiction" and the harm of psychological or physical dependence. A 1993 study of public opinion about pain relief found that 87 percent of respondents expressed concern that they would become over-reliant on pain medication, and 82 percent feared that they would become addicted.(24) These considerations are extremely important to some individuals and will shape their willingness to seek or to accept pain relief. Health care professionals should explore these concerns with patients and family members to dispel misunderstanding and encourage their acceptance of appropriate pain medication. ------------------------------------------------------------------------ (22) See A. Jacox et al., Management of Cancer Pain, Clinical Practice Guideline no. 9, AHCPR pub. no. 94-0592 (Rockville Md: U.S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy, Research, March 1994), 134-38; Acute Pain Management Guideline Panel, 60-62. If the risk of psychological dependence is minimized as far as possible consistent with adequate palliation, but remains significant, a prudent judgement weighing the risks and benefits of treatment could still support the provision of needed treatment. See the discussion regarding the risk of hastening a patient's death, pp. 162-65. (23) Many health care professionals have an inflated sense of the risk of psychological dependence. See, e.g., R.M. Marks and E. J. Sachar, "Undertreatment of Medical Patients with Narcotic Analgesics," Annals of Internal Medicine 78 (1973): 173-81; M. Angell, "The Quality of Mercy," New England Journal of Medicine 3067 (1982): 98-99;and the discussion in chapter 3. (24) Mellman Lazarus Lake, "Presentation of Findings:Mayday Fund," September 1993. page 162 WHEN DEATH IS SOUGHT Patients and family members may also believe that if they receive opioids at one stage of the disease, the drugs will be less effective at a later stage when the pain is more severe. While patients do develop tolerance to some pain relief medications, including opioids, there is no ceiling dosage. If carefully adjusted to minimize side effects, doses can be increased substantially to maintain or increase palliation. Furthermore, the physiology of pain is such that smaller doses of analgesia are required to prevent pain or treat moderate pain than are needed to treat pain that has become severe.(25) The provision of appropriate pain relief rarely poses a serious risk of respiratory depression. Moreover, the provision of pain medication is ethically and professionally acceptable even when such treatment may hasten the patient's death, if the medication is intended to alleviate pain and severe discomfort, not to cause death. One commonly identified barrier to adequate pain relief is the fear of health care professionals that pain medications such as opioids may hasten a patient's death. In a major study of 687 physicians and 759 nurses, 41 percent of respondents agreed with the statement that "clinicians give inadequate pain medication most often out of fear of hastening a patient's death."(26) Opioids represent the primary means of pain relief for most patients in severe pain.(27) While these medications can slow the patient's breathing, when properly used the risk of respiratory depression that harms the patient or hastens death is minimal. According to one estimate, the risk of respiratory distress with the use of opioids is no more than one percent.(28) The risk is low because patients develop tolerance that lessens the potential side effects of opioids, such as respiratory depression or mental cloudiness. Like other aspects of palliative care, providing opioids requires care and continual reassessment of the patient's condition. When the level of medication is carefully adjusted, large doses of opioids can be provided safely in any health care setting, including a patient's home. ---------------------------------------------------------------------- (25) See chapter 3. (26) M. Z. Solomon et al., "Decisions Near the End of Life: Professional Views on Life-Sustaining Treatments," American Journal of Public Health 83 (1993): 14-23. (27) See chapter 3. (28) Angell. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 163 It is widely recognized that the provision of pain medication is ethically and professionally acceptable even when the treatment may hasten the patient's death, if the medication is intended to alleviate pain and severe discomfort, not to cause death.(29) In an unusual case, a dying patient who had not received opioids previously might require a large dose to relieve sudden severe pain, posing a significant risk of hastening death. Health care professionals should seek to minimize this risk, consistent with adequate treatment for pain and other symptoms. Even if significant risk remains, the benefits of treatment will outweigh that risk in some cases. Some Task Force members analyze such cases in terms of the principle of double effect. According to this principle, an action with both good and evil effects is permitted if the action is not intrinsically wrong the agent intends only the good and not the evil effect, the evil effect is not the means to the good effect, and there is a favorable balance between the good and evil effects.(30) A decision to provide pain medication in the case described above would be ethically acceptable under this analysis. The administration of medication is not intrinsically wrong and is intended to alleviate the patient's pain, not to hasten the patient's death, although the risk of death could be anticipated. Respiratory failure is not intended, nor is it necessary to relieve pain. In addition, because the patient is terminally ill and experiencing severe pain, the good achieved would outweigh the risk of harm. ---------------------------------------------------------------------------- (29) American Medical Association, Council on Ethical and Judicial Affairs, Current Opinions (Chicago: American Medical Association, 1989), sec. 2.20, P. 13. A Catholic directive states that "it is not euthanasia to give a dying person sedatives and analgesics for the alleviation of pain, when such a measure is judged necessary, even though they may deprive the patient of the use of reason, or shorten his life." National Conference of Catholic Bishops, Ethical and Religious Directives for Catholic Health Facilities (St. Louis: Catholic Health Association of the United States, 1975), 13-14, par. 29. See similarly the Vatican's 1980 "Declaration on Euthanasia," in President's Commission, 304-5. A Jewish authority agrees that "relief of pain is adequate reason to assure palliation therapy, even with attendant risk." D. M. Feldman and F. Rosner, ed., Compendium on Medical Ethics, 6th ed. (New York: Federation of Jewish Philanthropies, 1984). See similarly I. Jakobovits, Jewish Medical Ethics, 2d ed. (New York: Bloch, 1975), 276. See also New York State Task Force on Life and the Law, When Others Must Choose, 208- 11; President's Commission, 77-82. (30) T. L. Beauchamp and J. F. Childress, Principles of Biomedical Ethics, 3d ed. (New York: Oxford University Press, 1989), 127-28. Evaluation of the balance of good and evil effects is classically phrased in terms of proportionality. Most instances of causing unintended but foreseeable deaths would be judged as morally wrong on this basis because the negative effect of the patient's death would outweigh any good effects, but exceptions are possible in cases such as the one described. page 164 WHEN DEATH IS SOUGHT Other Task Force members do not accept all elements of this principle of double effect but agree that intentions can be a significant and decisive factor in evaluating actions. They note that many medical interventions, including high-risk surgery, intend to cure the patient or to relieve pain, but entail some identifiable and foreseeable risk to life. Society has granted physicians the authority to evaluate the risks and benefits of treatment, to recommend a course of treatment, and to provide treatments chosen by a patient or a surrogate in pursuit of accepted medical goals. Judgments about potentially risky and life-threatening interventions undertaken to cure the patient or relieve pain fall squarely within the scope of the physician's professional role.(31) Whether a given dose of morphine is appropriate for pain relief cannot be determined simply by looking at the number of milligrams prescribed, but must be assessed on a case-by-case basis using prudent medical judgment. Large doses may be required to relieve pain for some patients, and can be administered without undue risk. If the patient has received increasing doses of morphine over time, for example, he or she may sustain a larger dose without significant likelihood of harm. A greater risk of side effects, including depressed respiration and the possibility of death, would be acceptable for a dying patient in severe pain, provided that the patient or those deciding on his or her behalf have been informed of and accept this risk. For the rare patient who requires sedation that renders him or her unconscious in order to avoid intolerable suffering during the end stage of the dying process, the administration of morphine to maintain a state of unconsciousness may be medically necessary and appropriate.(32) Physicians should discuss these decisions with the patient and with other health care professionals caring for the patient. Open discussion of these and other alternatives promotes good medical care and can prevent misunderstanding. Similar considerations apply when health care providers do not administer medications directly, but write a prescription or give patients medicine to use at home. Physicians regularly provide patients with a supply of pain medication that can last for 30 to 90 days. In some cases, a physician may perceive a risk that the patient will use the medication to commit suicide. As discussed ---------------------------------------------------------------------- (31) President's commission, 77-82. (32) In these cases, sedative drugs often are used in combination with the opioid that is being administered to manage pain. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 165 below, when health care professionals believe that a patient may be considering suicide, they should encourage the patient to talk about his or her suicidal thoughts, and respond to concerns that may be causing distress, such as inadequate symptom control or clinical depression.(33) For patients who express suicidal ideation or pose a risk of suicide, the physician must formulate an individualized judgment, weighing the potential benefits of palliation in the home setting against the risk of suicide. He or she should consider several factors, including the likelihood of suicide, the severity of the patient's pain or symptomatic distress, and the possibility of alternative treatments or means of providing the medication that minimize the risk of suicide. Physicians must also consider the benefit of and need for psychiatric counseling and treatment. A physician may decide that the risk of providing large doses of pain medication is too great, given the circumstances of a particular case. In some cases, however, a physician may appropriately determine that the benefit of or need for pain medication outweighs a risk that the patient will commit suicide. These cases are legally and ethically distinct from situations when a physician provides drugs with the intention of assisting the patient to commit suicide. The education of health care professionals about pain relief and palliative care must be improved. Training in pain relief and palliative care should be included in the curriculum of nursing schools, medical schools, residencies, and continuing education for health care professionals. In addition, biomedical research facilities should engage in further research in the physiology of pain and its appropriate relief, both at the basic and the clinical levels. Health care professionals often lack the clinical knowledge and experience needed to provide effective palliative care. These deficiencies must be addressed in all contexts in which professional education occurs. In recent years, curricula have been developed that can serve as valuable resources. The most extensive document is the Core Curriculum for Professional Education in Pain, developed by the International Association for the Study of Pain.(34) The American Society of Clinical Oncology and the International Society of Nurses in Cancer Care have also developed curricula.(35) ----------------------------------------------------------------------- (33) See pp. 177-81. (34) International Association for the Study of Pain, Task Force on Professional Education, Core Curriculum for Professional Education in Pain (Seattle: IASP Publications 1991). Information on obtaining this document and other resources appears in Appendix G. (35) American Society of of Clinical Oncology, "Cancer Pain Assessment and Treatment Curriculum Guidelines," Journal of Clinical Oncology 10 (1992): 1976-82; R. Tiffany, "A Core Curriculum for a Post Basic Course in Palliative Nursing Care," Palliative Medicine 4 (1990): 261-70. Other resources include textbooks, such as J.J. Bonica, The Management of Pain, 2d ed. (Philadelphia: Lea and Febiger, 1990). See also the many references provided in the curricula and in the American Pain Society's Principles of Analgesic Use. Medical and page 166 WHEN DEATH IS SOUGHT Perhaps most importantly, educators must convey to nursing and medical students that pain and symptom management are a basic and essential component of medical care for professionals in all areas of medical practice. Too often, education about pain relief takes place only within departments of anesthesia, where study is focused largely on the treatment of post-operative pain. The relief of pain related to terminal and chronic illnesses must also be integrated into the medical and nursing curriculum, particularly in specialties such as oncology, where the treatment of pain should be a central concern. The importance of pain and symptom management must be stressed during medical and nursing school as well as during clinical training. For medical students, education during residency is especially important in shaping their future orientation for medical practice. Palliative care must be an integral part of residency training. Continuing education for health care professionals is also vital. Many practicing physicians and nurses require continuing education about pain relief to remedy deficiencies in their initial professional training. Health care professionals should also be regularly informed about advances in the field. All means of continuing education should be used to educate doctors and nurses about palliative care, including professional workshops and grand rounds in hospitals. In recent years, general guidelines for the treatment of pain have been issued by organizations such as the Agency for Health Care Policy and Research and the American Pain Society (APS).(36) These guidelines offer a valuable framework and resource for improving palliative care. Physicians and nurses may also benefit from several easy-to-use references on pain relief that are now available.(37) These resources will not be effective, however, ---------------------------------------------------------------------- (36) Acute Pain Management Guideline Panel; Jacox et al.; American Pain Society. (37) These include the American Pain Society's Principles of Analgesic Use; D. E.Weissman et al., Handbook of Cancer Pain Management, 3d ed. (Madison: Wisconsin Pain Initiative, 1992); and Washington State Medical Association, Pain Management and Care of the Terminal Patient (Seattle; Washington State Medical Association, 1992). CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 167 without both institutional commitment to implement the guidelines and effective programs to educate health care professionals. Activities at the state level can also enhance public and professional education about pain relief. For example, in Wisconsin, as part of a comprehensive statewide approach to improve pain management, the Wisconsin Cancer Pain Initiative has sponsored meetings and workshops for professional education and has devised a curriculum on cancer pain management. The Initiative has developed a network of almost 300 health care professionals to serve as informal resources in their community and as advocates for improved pain control.(38) New York's extensive network of biomedical research facilities can also play a critical role in improving pain relief and palliative care. These institutions should devote greater resources to researching the physiology of pain and its appropriate relief, at both the basic and the clinical levels. Such research is particularly important for individuals suffering from chronic pain, for whom existing pharmacological treatments may not be appropriate. Hospitals and other health care institutions should explore ways to promote effective pain relief and palliative care and to remove existing barriers to this care. Hospitals and other health care facilities have the responsibility to promote high quality medical care within their institutions. This responsibility should encompass the delivery of ----------------------------------------------------------------------- (38) J. L. Dahl and D. E. Joranson, "The Wisconsin Cancer Pain Initiative," in Advances in Pain Research and Therapy, ed. K. M. Foley et al., vol16 (New York: Raven Press, 1990),499-503; D. E. Weissman, M. Gutmann, and J. L. Dahl, "Physician Cancer Pain Education: A Report from the Wisconsin Cancer Pain Initiative," Journal of Pain and Symptom Management 6 (1991): 44548. One innovation of the Wisconsin Cancer Pain Initiative is the Cancer Pain Role Model program, established in 1990. D. E. Weissman, J. L. Dahl, and J. W. Beasley, "The Cancer Pain Role Model Program of the Wisconsin Cancer Pain Initiative," Journal of Pain and Symptom Management 8 (1993): 29-35. ne Mayday Fund, a private foundation devoted to relieving pain and associated suffering, funds professional educational programs, including a one-day role model training program for social workers, a two-day course for primary care faculty physicians, and training programs for physicians and nurses ranging from one to four weeks to a one-year fellowship. Mayday Fund, "1993 Role Model Program." page 168 WHEN DEATH IS SOUGHT adequate pain and symptom management. Institutions must clearly identify pain and symptom management as a professional responsibility of physicians and nurses.(39) They also must provide the resources needed for such care, including reference materials, in-service training, and the availability of clinicians with expertise in palliative care. Facilities also can improve pain management by making patients' pain more "visible" for health care professionals. One basic way to achieve this goal is to train nurses and physicians to ask patients about their pain on a regular basis. Measures of pain intensity and relief should then be recorded in the medical record and prominently displayed. Hospitals and nursing facilities should also address palliative care in their quality-assurance procedures. In 1991, the American Pain Society proposed "Quality Assurance Standards for Relief of Acute Pain and Cancer Pain."(40) Its recommendations are designed to improve the treatment of all types of pain. The APS emphasizes the need for systems "to assure that the occurrence of pain is recognized and that when pain persists, there is rapid feedback to modify treatment." Among other steps, the standards recommend that: (1) health care professionals should record pain and pain relief in the medical chart; (2) each clinical unit should identify levels of pain and relief that would trigger a review ofcurrent pain therapy, and should survey patient satisfaction; (3) institutions should make information about analgesics readily available; (4) facilities should inform patients that they will receive attentive analgesic care; and (5) facilities should monitor adherence to these practices. -------------------------------------------------------------------------- (39) A statement by a Task Force on Practitioner-Assisted Suicide at the University of Rochester Medical Center could provide a model for other institutions. Rejecting the options of assisted suicide and euthanasia, the group unanimously recommended "that greater attention be paid to the clinical problems of the dying patient. Although these issues are presently covered within the Medical and Nursing School curriculum, would like to see increased attention to these matters at all levels of educational development for our students, staff, residents and faculty." January 25, 1994. (40) The proposal appears as Appendix C below. American Pain Society, Committee on Quality Assurance Standards, "American Pain Society Quality Assurance Standards for Relief of Acute Pain and Cancer Pain," in Proceedings of the VIth World Congress on Pain, ed. M. R. Bond, J. E. Charlton, and C. J. Woolf (New York: Elsevier Science Publishers. 1991). CHAPTER 8 --CARING FOR SEVERLY ILL PATIENTS page 169 Public education is essential to improve pain relief practices. Nurses and physicians should create an atmosphere that will encourage patients to seek relief of pain. To the extent possible, strategies for pain relief should give patients a maximal sense of involvement and control. Many patients believe that they should not discuss their pain and symptoms with health care professionals. They do not realize the extent to which symptom palliation is possible, and may feel that talking to their doctor or nurse about pain and symptoms would be pointless or would be perceived as complaining or weakness.(41) Health care professionals should encourage patients to report their symptoms and seek relief from pain. Awareness of patient symptoms, like physical findings and laboratory tests, can contribute to formulating a diagnosis and assessing a patient's condition. Alleviating pain and suffering often facilitates the healing process and markedly improves the patient's quality of life. Health care professionals should also seek the participation of family members or others close to the patient in pain relief efforts. While individuals are often reluctant to seek pain relief for themselves, they do so more readily for family members. (42) Whenever possible, pain and symptom management should involve patients and give them a sense of control. For many patients, behavioral techniques are helpful. In some cases in which oral medications do not relieve pain sufficiently, patient-controlled analgesia using an infusion pump may be possible. Patient participation can contribute to effective analgesia and add to the patient's feeling of independence. Materials and programs have been developed to educate patients and help them to seek pain relief effectively. These can serve to complement discussions with health care professionals, or compensate --------------------------------------------------------------------- (41) Meliman Lazarus Lake. (42) Ibid. page 170 WHEN DEATH IS SOUGHT in part for the failure of health care professionals to provide information and encourage patients to talk about their pain and symptoms.(43) Several organizations are also available to provide information and assistance to patients.(44) Insurance companies and others responsible for health care financing should promote effective pain and symptom management and address barriers that exist for some patients. While the personal and financial resources required for effective palliative care are more modest than those used for some forms of curative therapy, they can be significant. Some insurance companies will pay only for a supply of medication lasting 21 or 30 days, even when larger quantities are appropriate and it is difficult for the patient to obtain a new supply.(45) Some policies do not pay for hospitalization required to alleviate pain or for appropriate palliative care in the home.(46) Patients without medical insurance face far more imposing barriers to receiving palliative treatment. While deficiencies in the provision of palliative care are widespread, disadvantaged patients receive the least support and care during the dying process as well as other stages of illness. The World Health Organization has recommended that health care resources for palliative care should be increased, and that resources for curative treatments, especially those of questionable ------------------------------------------------------------------------ (43) The Agency for Health Care Policy and Research has produced two booklets for patients: Acute Pain Management Guideline Panel, Pain Control After Surgery: A Patient's Guide, AHCPR pub. no. 92-0021 (Rockville, Md.: U. S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, 1992); and Agency for Health Care Policy and Research, Managing Cancer Pain AHCPR pub. no. 94-0595 (Rockville, Md.: U. S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, 1994). The American Cancer Society and National Cancer Institute have prepared a clear and comprehensive booklet entitled Questions and Answers About Pain Control: A Guide for People with Cancer and Their Families (1992). Shorter booklets on cancer pain relief, directed to adult patients, adolescents, and parents of children with cancer, are available from the Wisconsin Pain Initiativc. (44) In the New York City metropolitan area, Cancer Care promotes education about pain relief. The organization also provides guidance, social services, and financial assistance to cancer patients and loved ones. The Cancer Information Service of the National Cancer Institute also offers information about pain management and other cancer-related issues to patients, families, health care professionals, and the general public. See list of resources in Appendix G. (45) Federal regulations do not allow prescriptions for certain drugs such as morphine to be refilled. (46) Foley, 292. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 171 effectiveness, could be reduced.(47) Others believe that the resources needed for effective palliative care could be provided without significantly diminishing the provision of curative therapy. Access to palliative care and pain relief must no doubt be addressed as part of the broader question of access to health care --in particular, in the context of current deliberations on health care reform. The complex issues of access to health care and allocation of health care resources are beyond the scope of this report. Nevertheless, it appears that much can and should be done to remove financial barriers and to promote effective pain and symptom management. New York State statutes and regulations should be modified to improve the availability of medically necessary analgesic medications, including opioids. This should be done in a balanced manner that acknowledges the importance of avoiding drug diversion. Statutes and regulations governing controlled substances must strike a careful balance between two important public health goals. On the one hand, the law must encourage the availability of analgesic medications, including opioids, for individuals who need them for legitimate medical uses. On the other hand, the law should prevent diversion of these same drugs to persons who will abuse them. Experience has shown that certain provisions of current New York law pose obstacles to the availability of medication to relieve pain or severe discomfort. The Task Force believes that these provisions should be modified to enhance the appropriate care and treatment of seriously ill patients. Specifically, the Task Force recommends the following changes to New York statutes and regulations. First, statutes and regulations governing controlled substances should include a positive statement that opioids and similar drugs have a useful and legitimate medical purpose and that they must be available to patients whenever medically appropriate. Such a statement --which is already present in federal statutes and regulations --would undercut the prevailing public perception that controlled substances are inherently harmful, and would provide ----------------------------------------------------------------------- (47) World Health Organization, Cancer Pain Relief and Palliative Care: Report of a WHO Expert Committee, WHO Technical Report Series 804 (Geneva: World Health Organization, 1990), page 172 WHEN DEATH IS SOUGHT legal support for policies that actively encourage medical use of these drugs.(48) In addition, an affirmative statement supporting the use of controlled substances in the medical context might lessen the stigma attached to the provision and use of analgesic medications, further reducing impediments to the legitimate use of these medications. Second, the Task Force urges the legislature to eliminate the requirement that health care practitioners report addicts and habitual users to the Department of Health.(49) This requirement stigmatizes individuals who use controlled substances for medical purposes. In addition, it places physicians in an awkward position in relation to patients they must report, and may cause some individuals to refuse needed pain relief. The Task Force also recommends that the legislature modify the definition of the terms "addict" and "habitual user" in the Public Health Law to exclude patients who use controlled substances in a medically appropriate manner.(50) By applying such labels to patients who use controlled substances for the relief of pain or severe discomfort, the law unjustifiably gives credence to physicians' and patients' fears that patients will become dependent on medically necessary drugs.(51) As discussed above, these fears are largely unfounded.(52) It is also inappropriate to apply a term so charged with negative connotations to patients who use drugs for legitimate medical purposes.(53) Third, the Task Force proposes that barriers to obtaining long-term supplies of medically necessary controlled substances should be modified. These barriers in existing statutes and ------------------------------------------------------------------------ (48) See Controlled Substanecs Act, 21 U.S.C. 801 (1993) ("Many of the drugs included within this title have a useful and legitimate medical purpose and are necessary to maintain the health and general welfare of the American people."); 21 C.F.R. Part 1306.07(c) (1993) ("This section is not intended to impose any limitation on a physician or authorized hospital staff to ... administer or dispense (including prescribe) narcotic drugs to persons with intractable pain in which no relief or cure is possible or none has been found after reasonable efforts.). (49) N.Y. Public I lealth Law 3372 (McKinney 1985); 1 0 N.Y.C.R.R. 80.108. (50) N.Y. Public Health law 3302(l) & (17) (McKinney 1985). (51) According to a 1993 national survey, 82% of all Americans fear that they would become addicted to pain medication, and 87% fear that they would become over-reliant on it, Mellman Lazarus Lake. (52) See the discussion in this chapter and in chapter 1. (53) Significantly, the federal definition of the term "addict" does not include patients who use controlled substances to relieve chronic pain. See D. E. Joranson, "Federal and State Regulation of Opioids," Journal of Pain and Symptom Management 5 (1990): S12, S14. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 173 regulations can impose severe burdens on patients who live far away from a pharmacy that stocks controlled substances, or whose insurance plans require the use of mail-order pharmacies that delay access to the medication.(54) For example, although physicians may prescribe a three-month supply of certain controlled substances to relieve pain for patients over 65 who suffer from chronic and incurable diseases,(55) chronically and incurably ill patients under age 65 must obtain a new prescription for pain medication every 30 days.(56) This regulation should be eliminated.(57) Likewise, current regulations permit a physician to issue an additional prescription for Schedule II substances only when the patient has exhausted all but a seven-day supply of the previous prescription.(58) The Department of Health should modify this prohibition to permit the earlier issuance of second prescriptions in hospital pharmacies, or prescriptions for particular patients based on specified medical criteria. Fourth, the Task Force urges the Department of Health to consider regulations that would facilitate the use of controlled substances on a trial basis. Patients react differently to pain medications, and often physicians can determine the appropriate medication for a patient only after trial and error with a variety of dosages or drugs. If patients must purchase a full prescription of each medication they try, the costs can be prohibitive. The Department of Health should therefore evaluate the benefits of permitting pharmacies to fill prescriptions partially for controlled substances, as is currently permitted in the hospice setting.(59) This policy would allow patients to try a drug for a short time period without purchasing the full prescription. Finally, the legislature and the Department of Health should assess the administrative and economic feasibility of eliminating the triplicate prescription system for controlled substances. Under ------------------------------------------------------------------------ (54) R. K. Portenoy, "The Effect of Drugs Regulation on the Management of Cancer Pain," New York State Journal of Medicine 91 (1991): 16S. (55) 10 N.Y.C.R.R. 80.67(d)(1)(iii) & 80.69(d)(1)(iii). (56) 10 N.Y.C.R.R. 80.67(c). (57) The Department of Health should also study the need and appropriateness of explicitly allowing a three-month supply of controlled substances for the relief of severe discomfort, as well as pain. (58) 10 N.Y.C.R.R. 80.67(c); 80.69. Patients may refill prescriptions for other medications earlier than seven days prior to the date the previously dispensed supply would be exhausted only if specifically authorized by the prescriber. N.Y. Public Health law 3339 (McKinncy 1985). (59) 10 N.Y,C.R.R. 80.73. page 174 WHEN DEATH IS SOUGHT this system, copies of each prescription are retained by the physician and the pharmacy and an additional copy is sent to the Department of Health. Many physicians have criticized the triplicate prescription program as unnecessarily intrusive and as a deterrent to the prescription of medically useful controlled substances.(60) Although these criticisms are not supported by empirical data,(61) a simplified system might assuage physicians' concerns while retaining the record-keeping benefits that the triplicate system provides. One alternative to the triplicate forms would be a single serialized form that pharmacies could transmit electronically to the Department of Health. The Department of Health and others should study the feasibility of this and other reporting systems with the goal of replacing the current triplicate system. While statutory and regulatory reform is important, changes in the law will not, in themselves, eliminate the underutilization of medically necessary controlled substances. Barriers to effective pain relief arise from many sources, including lack of information on the part of health care professionals and insufficient professional commitment to palliative care. Along with the modification of statutes and regulations, education and outreach will be essential to eradicate these barriers. To this end, professional organizations should play an active role in clarifying the ethical and legal acceptability of prescribing controlled substances for medical purposes. In particular, the perceived risk of sanctions often bears little relation to the actual "risks" of prescribing medications in accord with accepted medical standards. While clarification from the Department of Health and an affirmative statement of the value of narcotic analgesics will be valuable, these steps will have little affirmative impact unless health care professionals are informed and responsible about any clarification that is offered. ------------------------------------------------------------------------ (60) See P. B. Farnsworth, "Triplicate Prescription in New York: History and Review," New York State Journal of Medicine 91 (1991): SS; Portenoy, 16S ("The multiple copy prescription is a tangible reminder to the physician of the intense scrutiny that accompanies the prescription of these drugs, and awareness of this scrutiny may ... increase the clinician's perception that some personal risk accrues from the administration of these agents to patients."). (61) Criticisms of the triplicate prescription program tend to focus on the Department of Health's 1987 investigation of an oncologist who had failed to write dates and patient ages on all of his forms. See, e.g., Joranson, S17. This investigation appears to have been an isolated incident and does not provide evidence of a systematic problem. In fact, data compiled by the Department of Health suggest that the triplicate prescription system has not deterred physicians from prescribing controlled substances for medical purposes. Between 1980 and 1991, for example, annual prescriptions for morphine increased from 5,555 to 40,164. J. D. Eadie, Director, Division of Public Health Protection, New York State Department of Health, "Memorandum to the New York State Task Force on Life and the Law," August 13, 1993. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 175 Pharmacists must also be educated about the importance of providing controlled substances for pain relief and their responsibility to do so. At a minimum, they should be encouraged to stock medically necessary controlled substances routinely. If encouragement fails, the Department of Health should consider regulations aimed at promoting availability, such as a requirement that pharmacies provide controlled substances within 24 hours of a patient's request. Diagnosing and Treating Depression Health care professionals should be familiar with the characteristics of major depression and other common psychiatric illnesses, as well as the possibility for treatment. They must be sensitive to the special factors complicating the diagnosis of these conditions among the elderly and the terminally ill. Physicians must also be trained to distinguish major clinical depression from the sadness and temporary reactive depression that often accompany terminal illness. Major clinical depression is generally treatable and can be treated effectively even in the absence of improvement in the underlying disease. Patients should also receive appropriate treatment for less severe depression that often accompanies terminal illness. Depression is frequently underdiagnosed and undertreated, especially for the elderly and for patients with chronic or terminal medical conditions.(62) Health care professionals must be aware of the risk factors for depression and the common symptoms that patients experience when suffering from depression. Risk factors for major depression include personal or family history of depressive disorder, prior suicide attempts, female gender, lack of social supports, stressful life events, and current substance abuse.(63) ----------------------------------------------------------------------- (62) See chapter 1 for complete discussion. (63) Depression Guideline Panel, Depression in Primary Care, vol. 2, Treatment of Major Depression, Clinical Practice Guideline, no. 5, AHCPR pub. no. 93-0551, (Rockville, Md.: U. S. Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, April 1993), 1. page 176 WHEN DEATH IS SOUGHT Major depression is marked by the presence of symptoms for at least two weeks, almost every day, all day. These symptoms include either depressed mood (feeling sad or blue) or loss of interest in activities that are normally pleasurable. In addition, patients with depression experience at least three of the following symptoms: (1) significant weight loss/gain, (2) insomnia/hypersomnia, (3) psychomotor agitation/retardation, (4) fatigue, (5) feelings of worthlessness (guilt), (6) impaired concentration (indecisiveness), (7) recurrent thoughts of death or suicide. Other physical or psychological symptoms such as headaches, aches and pains, digestive problems, sexual problems, pessimistic or hopeless feelings, and anxiety may also accompany depression. Patients with serious medical conditions, especially terminal illnesses, may develop a range of depressive symptoms short of major depression. Experience with cancer patients indicates that with the initial diagnosis, patients often respond with shock and disbelief or denial of the diagnosis. Subsequently, patients may experience sad or depressed moods, anxiety, and other symptoms commonly associated with depression. Symptoms usually dissipate within two to three weeks once the patient is receiving treatment or has adjusted to his or her situation. These episodes, referred to as "reactive depressive symptoms" or "adjustment disorder with depressed symptoms," can reoccur at various times during the course of an illness.(64) Physicians and other health care professionals must be able to assess depression and the risk of suicide. Since many individuals do not seek out mental health professionals to treat depression, primary care physicians and physicians treating patients with terminal and chronic illness should evaluate patients for depression during a regular medical visit.(65) Diagnosing the physical symptoms of depression may be especially difficult for patients with coexisting medical conditions because some physical symptoms associated with depression may be caused by the illness or medications. --------------------------------------------------------------------------- (64) A.J. Roth and J.C. Holland, "Treatment of Depression," Primary Care in Cancer 14 (1994):24-29. (65) Appendix E contains a series of questions that can assist physicians in evaluating the patient and determining the presence and severity of depression. (66) Dr. William S. Breitbart, Assistant Attending Psychiatrist, Psychiatry Service, Department of Neurology, Memorial Sloan-Kettering Cancer Center, presentation to the New York State Task Force on Life and the Law, May 13, 1992. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 177 More than 80 percent of patients diagnosed with major depression can be effectively treated.(66) The National Institutes of Health (NIH) Consensus Panel on Depression in Late Life lists five goals for treating depression: (1) decreasing symptoms of depression, (2) reducing risk of relapse and recurrence, (3) increasing quality of life, (4) improving medical health status, and (5) decreasing health care costs and morrtality.(67) The initial phase of treatment should attempt to bring about a remission of the symptoms. Following remission, therapy should ordinarily be continued for the next six to nine months to prevent relapse and recurrence. Finally, for some patients, a third phase of maintenance therapy will be necessary beyond the first year of treatment to prevent further relapse (68). Health care professionals must understand that even in patients with coexisting medical conditions, major depression can be successfully treated through pharmacological treatments and psychotherapy. In fact, experts contend that cancer patients often respond to lower dosages of antidepressants and in a shorter interval of time than physically healthy patients with depression.(69) In contrast, most elderly patients who are depressed respond to treatment more slowly than younger patients. Patients diagnosed with major depression should be referred to a psychiatrist for appropriate treatment. The primary care physician and other professionals such as social workers, psychologists, and clergy, may provide critical support to patients who experience depressive symptoms without major depression. Responding When a Patient Requests Assisted Suicide or Euthanasia It is common for terminally ill patients to have suicidal ideation, although patients rarely act on such thoughts. Physicians should create an atmosphere within which patients feel comfortable expressing suicidal thoughts. Discussion with a physician or other health care professional about suicide does not prompt suicide; on the contrary, talking with health care professionals often decreases the risk of suicide. Suicidal thoughts and suicidal actions represent distinct phenomena, especially for terminally ill patients such as those with acquired immunodeficiency syndrome (AIDS) or cancer. Many patients with advanced disease think about suicide at some point in the course of their illness. These thoughts usually stem from ----------------------------------------------------------------------- (67) NIH Consensus Development Panel on Depression in Late Life, "Diagnosis and Treatment of Depression in Late Life," Journal of the American Medical Association 268(1992):1018-24. (68) G. J. Kennedy, "Depression in the Elderly," in Psychiatry 1993, ed. R. Michaels et al., vol. 2 (Philadelphia: J. P. Lippincott, 1993), 1-1 1. (69) Roth and Holland, page 178 WHEN DEATH IS SOUGHT suffering, depression, and an overwhelming sense of hopelessness or helplessness. For some patients, framing the option of suicide may provide a sense of control: "If it gets too bad, I always have a way out." However, few patients who experience suicidal ideation actually attempt or complete suicide. When offered personal support and palliative care, most patients adapt and continue life in ways they might not have anticipated. Clinicians often observe that patients are able to sustain and cope with tremendous suffering as they approach death. Life often becomes more precious as it becomes shorter.(70) Nevertheless, suicidal thoughts must be taken seriously. They reflect deep personal suffering. A patient's suicidal thoughts may indicate a worsening of disease or insufficiencies in current therapy. In many cases they are accompanied by treatable psychiatric conditions. Health care professionals should actively explore indications of suicidal thinking and should respond appropriately when a patient expresses such thoughts. It is well-established that talking about suicidal thoughts does not increase the risk of suicide and, indeed, generally decreases that risk. A physician or nurse who learns of a patient's suicidal thoughts can often help the patient address the factors leading to those thoughts. Acknowledging the patient's concerns and manifesting empathy and care can itself be therapeutic. Conversely, the failure of health care professionals to create an environment in which patients feel comfortable talking about suicide can increase the patient's suffering and sense of isolation, making suicide more likely in some cases.(71) Some health care professionals, like other people, find it extremely difficult to talk about suicide with patients. Medical and nursing training often does little to prepare them for this responsibility. Physicians and nurses who feel unable to discuss suicide with a patient must involve another health care professional who can provide this critical aspect of patient care. In addition, health care professionals must determine if psychiatric consultation is appropriate and necessary. At a minimum, all health care professionals must be sensitive to potential suicidal ideation. Explicitly or tacitly discouraging a patient from expressing suicidal ideation can make it more difficult for a patient to cope with his or her thoughts and feelings. -------------------------------------------------------------------------- (7O) William Breitbart, "Cancer Pain and Suicide," in Advances in Pain Research and Therapy, ed. K. Foley, J. J. Bonica. and V. Ventafridda, vol. 16 (New York: Raven Press, 1990),400401. (71) Ibid. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 179 When a patient requests assisted suicide or euthanasia, a health care professional should explore the significance of the request, recognize the patient's suffering, and seek to discover the factors leading to the request. These factors may include insufficient symptom control, clinical depression, inadequate social support, concern about burdening family or others, a sense of hopelessness, spiritual despair, loss of self-esteem, or fear of abandonment. These issues should be addressed in a process that involves both family members and health care professionals. Any response to a request for assisted suicide or euthanasia is morally weighty. A ready agreement to the request could confirm a patient's sense of despair and worthlessness. An attempt to ignore or evade the request may make a patient feel that his or her suffering is not taken seriously, adding to a sense of helplessness. Clinicians who hold diverse views about assisted suicide and euthanasia generally agree about the ways in which a physician or nurse should respond when a patient makes such a request. All concur that in most cases patients' concerns can be addressed in ways other than assisted suicide or euthanasia.(72) A request for assisted suicide or euthanasia may arise from diverse causes, including inadequate symptom control, clinical depression, a lack of social or financial resources, concern about burdening family or others, spiritual crisis, hopelessness, loss of self esteem, or fear of abandonment. In many cases, multiple factors contribute to a patient's sense of despair. Physicians, nurses, social workers, and other health care professionals must be prepared to listen carefully and explore the meaning of the request. This interaction can identify the clinical treatment or psychosocial support the patient may need. The process of communication itself often helps the patient feel less alone and desperate. Some of the factors leading to a patient's suffering and desire for suicide are clearly within the purview of medical practice. These can and must be addressed. As discussed throughout ----------------------------------------------------------------------- (72) T. E. Quill, "Doctor, I Want to Die," Journal of the American Medical Association 270 (1993): 872, See also N. Coyle, "The Euthanasia and Physician-Assisted Suicide Debate: Issues for Nursing," Oncology Nursing Forum 19, no. 7 suppi. (1992): 45; J. Teno and J. Lynn, "Voluntary Active Euthanasia: 'The Individual Case and Public Policy," Journal of the American Geriatrics Society 39 (1991): 827-30-1 Breitbart, "Cancer Pain," 409-10. page 180 WHEN DEATH IS SOUGHT the report, many patients receive inadequate pain and symptom management. An acceptable level of pain relief can be provided to almost all patients. Furthermore, many terminally ill patients, especially those who consider actively ending their lives, are clinically depressed. Their depression, like that of others, generally responds to psychiatric treatment. Interventions to increase a patient's functioning can also serve to reduce suffering and improve the quality of life. For example, an individual suffering from quadriplegia can benefit from rehabilitative therapy and from devices to enhance their mobility.(73) For some individuals suffering from amyotrophic lateral sclerosis (ALS), the ability to communicate may be most crucial and can be enhanced with technological assistance.(74) Treatment for symptoms such as severe nausea or difficulty breathing may also significantly improve the patient's quality of life.(75) Other types of suffering are more difficult to address. Responding to a patient's personal and psychosocial needs can usually be accomplished best with the participation of family members and others close to the patient. Professional colleagues can also offer valuable assistance. A social worker can address psychosocial problems. A chaplain can respond to a patient undergoing a spiritual crisis. Nonetheless, referral to a social or spiritual "specialist" will rarely suffice to resolve a patient's concerns. The process of dying, or chronic illness, is complicated and profound. The patient's experience of suffering often has deeply personal meanings or sources.(76) Without the ongoing involvement of health care professionals and others close to the patient, the patient will feel abandoned.(77) -------------------------------------------------------------------------- (73) D. R. Patterson et al., "When Life Support is Questioned Early in the Care of Patients with Cervical-Level Quadriplegia," New England Journal of Medicine 328 (1993): 506-9; Sharon S. Dittmar, Rehabilitation Nursing.- Process and Application (St, Louis: C. V. Mosby, 1989). (74) T. M. Sullivan, "The Language of Love," Ladies' Home Journal, March 1994,24-28. (75) See chapter 1. (76) As Arthur Kleinman writes of those facing chronic illness: "in the long, oscillating course of chronic disorder, the sick, their relatives, and those who treat them become aware that the meanings communicated by illness can amplify or dampen symptoms, exaggerate or lessen disability, impede or facilitate treatment. ... However, these understandings often remain unexamined, silent emblems of a covert reality that is usually dealt with indirectly or not at all." The Illness Narratives: Suffering Healing and the Human Condition (New York: Basic Books, 1988), 9. (77) As ethicist Paul Ramsey explains: "If the sting of death is sin, the sting of dying is solitude. What doctors should do in the presence of the dying is only a special case of what should be done to make a human presence felt to the dying. Desertion is more choking than death, and more feared. The chief problem of dying is how not to die alone." The Patient as Person (New Haven: Yale University Press, 1970), 134. The importance of the personal and psychosocial support provided by health care professionals is discussed in M. A. Boyle and R. L. Ciuca, "Amyotrophic Lateral Sclerosis,"American Journal of Nursing 1 (1975): 66-68. CHAPTER 8 -- CARING FOR SEVERLY ILL PATIENTS page 181 Marashaling personal and professional resources will often help patients even in the most difficult circumstances. In the words of a director of a support care program: Clearly defined goals, a time frame for assessing the effectiveness of a treatment measure, continuity of care, and working with the family as a unit all help to lessen the feelings of abandonment and hopelessness that frequently accompany requests for euthanasia or physician-assisted suicide.(78) Even more so than with conventional medical interventions, attempts to address the concerns that lead a patient to request suicide assistance or euthanasia carry no guarantee of success. Medicine, and even an expanded program of supportive care, will not eliminate all suffering. Still, conscientious pain management and supportive care can do much to alleviate suffering. In most cases, they can help the patient achieve a resolution that he or she finds tolerable. In all cases, they manifest a commitment not to abandon the patient. --------------------------------------------------------------------------- (78) Coyle, "The Euthanasia and Physician-Assisted Suicide Debate," 45. Pages 182, 183, 184 Intentionally Left Blank
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Patients with disseminated advanced cancer who undergo surgery are far more likely to endure long hospital stays and readmissions, referrals to extended care facilities and death, UC Davis researchers have found.
Their study, published today in PLOS One, highlights the dilemma physicians and surgeons face when their terminally ill cancer patients are diagnosed with a condition that may benefit from surgery, such as bowel obstruction, as well as the need for substantive discussions about the risks of surgery and implications on future quality of life.
“We commonly consult with patients who have acute surgical conditions and advanced cancer, and it has left us to weigh the risks and benefits of surgical intervention,” said lead author Sarah B. Bateni, a fourth-year surgery resident. “It’s important carefully examine their risks before proposing surgery, and to understand what their goals of care are for their remaining days.”
For the study, Bateni and colleagues examined the cases of approximately 18,000 patients who had stage 4 (metastatic) cancer who went on to undergo surgery. The cases were matched with patients who had similar characteristics such as age, gender and functional status before surgery and underwent similar operations but did not have stage 4 cancer.
They found that the group of patients with stage 4 cancer spent more time in the hospital (32 percent vs. 20 percent), were readmitted to the hospital more frequently (16 percent vs. 10 percent), were more often referred to another facility such as skilled nursing (16 percent to 13 percent) and had higher mortality within 30 days of the procedure (8 percent vs. 2.5 percent) than their counterparts who did not have late-stage cancers.
What was most surprising, Bateni said, was that the stage 4 cancer patients who didn’t have any complications during their hospitalization ended up staying in the hospital longer, were readmitted more often, were more often discharged to other facilities and had higher 30-day mortality compared to patients who didn’t have stage 4 cancer.
“This diagnosis really is an indicator of the frailty of these patients and is itself a risk factor for readmission, prolonged stays in the hospital and discharge to other facilities,” she said.
Bateni and her co-authors conclude that doctors and surgeons need to talk with their terminally ill cancer patients about their end-of-life goals, palliative care and the risks and benefits of surgery.
“We all need to clarify the goals of care for patients with advanced cancer prior to providing – or even discussing – the potential surgical interventions,” she said.
Given that the prevailing wisdom has been that surgery is the only treatment option for these patients, the researchers now plan to analyze the outcomes of stage 4 cancer patients with conditions that are considered operable but who don’t have surgery.
More information : Sarah B. Bateni et al, Increased Rates of Prolonged Length of Stay, Readmissions, and Discharge to Care Facilities among Postoperative Patients with Disseminated Malignancy: Implications for Clinical Practice,
PLOS ONE (2016).
DOI: 10.1371/journal.pone.0165315 Provided by UC Davis
Citation: Terminally ill cancer patients fare poorly after surgery (2016, October 25) retrieved 1 March 2019 from
This document is subject to copyright. Apart from any fair dealing for the purpose of private study or research, no part may be reproduced without the written permission. The content is provided for information purposes only.
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I witnessed death as I kept vigil for one of our clients who has cancer. I saw pinpoint pupils the day he died. And in the last minute, tears flowing on the side of the eye that has drooping eye. He was in sleep mode all afternoon that we just monitored his oxygen supply. And then his BP reading was very low and so is the oxygen level.
Immediately, coldness covered his face. As we lay him flat on the floor, the paramedics spent 20 min resuscitating him to no avail. The paramedics asked permission for the family to discontinue their efforts after 20 minutes. Silenced emanated the place. I cried, said a prayer with the family and lit an incense. It was 8pm.
At around 10am that day, he was still alert swallowing all the medications powdered and added in the apple juice. There was no poop or urine from 12noon to 8pm. When the bite of lunch came, tuna with mayo on crackers, he cannot swallow some of it. The progress was so fast from deep sleep, coma to coldness. And when the oximeter registered at 49, we called 911. He planned his last days in his home, we worked hard to take him out of the hospital IVs and MRI scans and more tests. He died in peace.
Now, I question why the medications were prescribed for a terminally ill patient with MRI scan showing a network of baby strokes to happen soon and the chest with progressing lung cancer.
The patient asked for his oxycontin pain med at 3 am. He swallowed two of them. And then had a clear voice talking about his plans for his business.
We gave the meds as prescribed by his hospital since his family is supporting his wishes to live longer. I could oppose the meds to allow his liver cells to recover but I am only the caregiver, assisting the client’s daily living and providing comfort that the pain meds cannot offer.
Signs of the preactive phase of dying
- increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
- withdrawal from active participation in social activities
- increased periods of sleep, lethargy
- decreased intake of food and liquids
- beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
- patient reports seeing persons who had already died
- patient states that he or she is dying
- patient requests family visit to settle “unfinished business” and tie up “loose ends”
- inability to heal or recover from wounds or infections
- increased swelling (edema) of either the extremities or the entire body
Signs of the Active Phase of Dying
- inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient quickly returns to severely unresponsive state (semi-coma)
- severe agitation in patient, hallucinations, acting “crazy” and not in patient’s normal manner or personality
- much longer periods of pausing in the breathing (apnea)
- dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
- other very abnormal breathing patterns
- severely increased respiratory congestion or fluid buildup in lungs
- inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
- patient states that he or she is going to die
- patient breathing through wide open mouth continuously and no longer can speak even if awake
- urinary or bowel incontinence in a patient who was not incontinent before
- marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or brown)
- blood pressure dropping dramatically from patient’s normal blood pressure range (more than a 20 or 30 point drop)
- systolic blood pressure below 70, diastolic blood pressure below 50
- patient’s extremities (such as hands, arms, feet and legs) feel very cold to touch
- patient complains that his or her legs/feet are numb and cannot be felt at all
- cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet, knees, and hands)
- patient’s body is held in rigid unchanging position
- jaw drop; the patient’s jaw is no longer held straight and may drop to the side their head is lying towards
Medications for terminally ill
It is normal and acceptable to remove regular medications during the very end stage of dying, what is called “active phase of dying,” since the patient’s body will not be benefited by them and all the systems and organs are shutting down and collapsing in the process of death.
At this stage, the patient often has difficulty swallowing, may not absorb the medications due to dehydration as well as liver and other organ failure, and giving the medications may be more troublesome than any benefit they could offer.
At the very end active phase of dying, only comfort medications (pain meds) are given so that the patient is allowed to die without suffering. At this point, there is absolutely no way of preventing death anyway, and any of the ordinary routine medications the patient used to take have no medical justification or value.
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