Prayers for terminally ill cancer patients

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 – 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! Food; Health; Home; Money; … Read Article

Alliance Community Hospital – Prayer Shawl Program –

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 –

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

    			       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

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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Published by connie dello buono

Health educator, author and enterpreneur [email protected] or [email protected] ; cell 408-854-1883 Helping families in the bay area by providing compassionate and live-in caregivers for homebound bay area seniors. Blogs at Currently writing a self help and self cure ebook to help transform others in their journey to wellness, Healing within, transform inside and out. This is a compilation of topics Connie answered at and posts in this site. View all posts by connie dello buono

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