Problems in Family Practice Dying and Death of a Family Member

John P. Geyman, MD Seattle, Washington

There are many factors that have mitigated against optimal or even adequate medical care of the dying patient despite recent technological advances in medicine. Major changes are now taking place in terms of public expectations, medical practice, and legislation related to dying and death in this society. The dying patient has five basic requirements that must be met: independence, dignity, acceptance by others of an individual approach to dying, relief of symptoms, and physical care. In many instances the home offers advantages over institutional settings if other family members are able to manage the bur­ dens of care. Regardless of setting, the family physician plays a central role in the care of the dying patient and his or her family during preterminal, terminal, and follow-up stages. This paper presents an approach to comprehensive care whereby the symptoms of incurable terminal illness can be effectively relieved on an individualized basis. Anticipatory guidance and care are important for the effects of terminal illness and death of a family member on the surviving family members, particu­ larly with regard to recognition and treatment of depression.

An excellent case report published several ture in recent years has addressed various aspects years ago entitled “ Dying in a System of ‘Good of death and dying from cultural, ethical, medical, Care’” 1 described the terminal care in a teaching and legal perspectives. hospital of an elderly woman with incurable end- Among the many problems related to death and stage disease. This report, which should be required dying in this country are the following: inadequate reading for all physicians, portrayed this care as a preparation of many patients for their own death, “nightmare of depersonalized institutionalization, institutional barriers to appropriate family in­ of rote management presumably related to sci­ volvement in the care of the dying family member, ence, and based on a team approach of subdivision inappropriate physician attitudes and behavior of work.” Unfortunately, the many problems with respect to dying and death, common reliance identified in this report are all too common on “curative” care instead of “ carative” care in throughout the country, and an extensive litera- terminal illness when the underlying disease proc­ esses can no longer be altered, high, often iatro­ genic, morbidity and costs of terminal care, and failure to prevent, recognize, or appropriately From the Department of Family Medicine, School of Medi­ cine, University of Washington, Seattle, Washington. Re­ manage depression and other medical problems in quests for reprints should be addressed to Dr. John P- Gey- surviving family members. Because of these and man, Department of Family Medicine, School of Medicine, RF-30, University of Washington, Seattle, WA 98195. related problems, major changes are taking place

® 1983 Appleton-Century-Crofts 125 THE JOURNAL OF FAMILY PRACTICE, VOL. 17, NO. 1: 125-134, 1983 DYING OF A FAMILY MEMBER in public expectations, medical practice, and legis­ hospital policy, or medical colleagues; the patient lation related to dying and death as part of an who finds it difficult to communicate with his overall societal reassessment of past and current physician; and the patient who did not communi­ practices. cate his desires concerning terminal care in ad­ The purpose of this paper is threefold: (1) to vance of an unexpected illness or accident. For the summarize some of the more important changing physician, the act clarifies the law concerning the societal trends related to dying and death, (2) to termination of life-supporting procedures in dying review the impact on the family of the dying and patients and affords protection from malpractice death of a family member, whether an infant, claims from families when other family members child, or adult, and (3) to present a practical ap­ disagree with the dying patients’ requests.4 proach to comprehensive care of the dying patient This type of legislation represents an effective and his or her family during preterminal, terminal, means by which individuals may invoke personal and follow-up care. autonomy over the process of their own dying through explicit instructions to their physicians. Such legislation has led to a variety of “living wills,” such as that proposed by Bok in 19766 and Some Changing Societal Trends that developed as part of the Washington State In 1900 most Americans died at home sur­ Natural Death Act of 19797 (Appendix). With rounded by family, friends, and clergy.2 Today, some exceptions (eg, the incompetent patient, about 80 percent of the terminally ill die in institu­ children, emergencies) the courts have supported tional settings, which tend to separate the patient the right of patients, after a process of informed from family and support systems.3 The emphasis consent, to refuse treatment, even when such on specialization and subspecialization, together treatment may be lifesaving.4,8'10 Courts have held with advanced diagnostic and therapeutic technol­ that the physician may not substitute his own ogy, has frequently placed “ curative” care in judgment for that of the patient,11 and the Califor­ fundamental conflict with the care needed by the nia Natural Death Act requires a physician to terminally ill. Keene4 points out that “ the real ter­ withdraw from a case and turn it over to another ror for the institutionalized dying is not death, but physician if he disagrees with the patient’s in­ mechanical maintenance without medical purpose, struction to stop treatment.12 wrists restrained by leather bonds so that tubes Although few states have ruled on the legality of cannot be removed, potentially continuous pain, “ no code blue” orders, there is widespread sup­ and ultimate indignity of having one’s remaining port for the “ no code” concept as a lawful, medi­ days controlled by strangers.” As Kass5 has ob­ cal activity under appropriate circumstances. served, when the dying patient most needs human Three criteria should be met in applying the “no contact, his ties to a “ community of men” are code” order: (1) The patient should be irreversibly medically replaced by inescapable ties to a “com­ and terminally ill, so that resuscitation would not munity of machines.” change the inevitable outcome (the basis for this There is a growing wave of popular sentiment judgment should be explicitly documented); (2) the for the rehumanization of the dying process. An “ no code” order should be discussed with the pa­ important outcome of this groundswell has been tient and family, and their desires should be recent legislation of the rights of the dying in a documented in the medical record; and (3) the number of states. The California Natural Death order must be written.13 Act, enacted in 1976, was the first “ Right to Die” Another significant trend in the care of the legislation passed in the United States. This act dying patient in this and other developed countries clarifies the right of patients to refuse treatment is the hospice movement. A classic example that under various circumstances. Those protected by has had considerable influence around the world the act include the comatose patient; the custodial, is the St. Christopher’s Hospice, which opened in physically disabled patient; the patient who re­ 1967 in London. This program is contractually quests that life-supporting procedures be discon­ linked to the National Health Service and provides tinued; the patient whose physician finds himself terminal hospital care or support services for confronted with conflicting pressures from family, home care. The hospice movement stresses indi-

126 THE JOURNAL OF FAMILY PRACTICE, VOL. 17, NO. 1, 1983 DYING OF A FAMILY MEMBER vidualized medical and nursing care with the aim about the future of a changing family, their grief to reduce the pain and discomfort of dying patients over the impending loss, and their increasing to a minimum while allowing the families to par­ fatigue due to the time requirements of care of ticipate actively in this care.13 Hospices have been the dying patient together represent cumulative developed in many communities of this country stresses for the family. These stresses are often during the last ten years and today present a real further heightened by a sense of guilt if there is any alternative to institutionalized dying for many perception that the dying patient's medical prob­ terminally ill patients. lems were potentially avoidable, and all feelings are sensitized by the various family members' individual past relationships with the dying patient. The death of a child involves some predictable Impact of Death on the Family and potentially preventable problems for the par­ Dying and death of a family member impose ents and siblings. Guilt is a problem for the par­ intense and disruptive stresses on the family, ents, since they will inevitably wonder whether which adapts to the impending and actual loss by they were in any way responsible for their child's some kind of internal reorganization. In many in­ illness or accident. Denial of the diagnosis is stances the ongoing sense of family itself is common, sometimes to the extreme situation of threatened, and the family’s structure, function, “the isolated wife syndrome,” when the father and identity may be quite different after the death. denies the child’s illness to the extent that he will This is particularly true in a small nuclear family, not talk to the mother about it at all.15 The parents which is more vulnerable to these stresses and is may feel by accepting a fatal diagnosis they are potentially more dysfunctional than an extended condemning their child to death, and may project kindred type of family.14 The outcome of family their anger on the physician who conveys this reorganization after the death of a family member diagnosis.16 is highly variable and depends on many factors, The death of a newborn causes more stress and including the level of family function before the grief within the family than is often recognized. fatal illness or accident and the extent to which the Parents, especially mothers, develop strong at­ surviving family has been able to cope with adap­ tachments to their babies during pregnancy and tive tasks to meet the family members’ new needs. usually experience classic grief reactions after The individual family members involved with neonatal death.17 Guilt is a common problem, and the care of a dying family member inevitably some mothers may even fantasize the cause of undergo role changes as the dying patient becomes death in such terms as a fall, not taking iron pills, increasingly dependent. The dependency of the not keeping prenatal appointments, or coitus dur­ dying patient may itself often create conflict within ing pregnancy.18 The sudden infant death syn­ the family, especially when the patient has been drome, involving about 10,000 babies in the largely responsible for the economic support of the United States each year, may cause especially se­ family. As Barton14 has pointed out in his excellent vere emotional reactions in the parents, aggra­ chapter on the family of the dying person: vated by the sudden, unexpected, and unexplained nature of death. These parents often feel anger, The sometimes unconscious decision that a spouse is to helplessness, loss of the meaning of life, and fear “train” for independence in the anticipated absence of for the safety of their other children.16 The result­ his or her mate can lead to a disruption of long- ant stress on the parents is often intense, and the established patterns of relating. Competitive conflicts divorce rate is high among couples experiencing are often activated as the freedom, mobility, and control such a loss. of the emerging independent spouse becomes a source In addition to the painful stresses on the family ofresentmentforthe ill person. The lowered self-esteem during the dying and death of a family member, and anger of the person who must become dependent there are serious implications for morbidity and becomes subtly and sometimes blatantly involved in the mortality of the surviving family members during relationship within the family. the subsequent grieving process. Various studies The pressures of current activities and responsi­ in the 1960s showed striking mortality and mor­ bilities of other family members, their uncertainty bidity rates in surviving spouses compared with

127 the JOURNAL OF FAMILY PRACTICE, VOL. 17, NO. 1, 1983 DYING OF A FAMILY MEMBER expected rates in the general population, including anticipate family reactions to this crisis and to a 40-percent increase in mortality in the first year facilitate communication and a normal grief proc­ of bereavement (usually from coronary thrombo­ ess within the family. The family physician can sis19,20) and a 2.5 times increased risk of suicide.21 play an active role in care of the family in preter­ In a recent large prospective study of over 4,000 minal, terminal, and follow-up phases, individual­ widowed people and an equal number of married ized in each case to the unique needs of the dying people matched for race, sex, age, and geography patient and his or her family. of residence, it was found that widowed men in all age groups experienced higher mortality than the married man.22 Clayton23 has observed that com­ pared with nongrieving individuals, grieving indi­ Preterminal Care viduals during the bereavement period seek more It is often the family physician who must ini­ medical attention for anxiety, depression, head­ tially talk with the patient about his or her life- aches, insomnia, and related (often somatized) threatening disease. For a variety of reasons there complaints. On an immunological level, some re­ may be some pressure not to tell the dying patient cent studies have shown decreases in several pa­ the full nature of the illness or the likely prognosis. rameters of the immune system after loss of a fam­ In one study, for example, 88 percent of physi­ ily member.24 cians tended not to tell their patients of a terminal Parkes,25 who has studied the outcomes of cancer diagnosis.29 Sometimes family members grieving for many years, has identified the follow­ will want to protect the patient from the diagnosis, ing risk factors associated with pathologic grief in some cases fearing resultant depression and (defined as continued severe grieving beyond 13 possible suicide. Withholding of such information, months): however, is not fair to the patient and establishes a 1. Unexpected or untimely death dysfunctional “ secret” alliance within the family. 2. Griever who is young Moreover, studies have shown that cancer pa­ 3. Griever with poor reaction to separation in the tients almost always want to be told,30,31 and most past or depressive illness dying patients, even if not told, become aware of 4. Griever who did not grieve openly their diagnosis. As Veatch points out, “ . . . truth­ 5. Griever who had additional stresses such as telling and self-determination are simply the inher­ loss of income or difficulty with the children ent right of the patient, independent of whether the With regard to normal grieving, Parkes26 and Lin- consequences are good or bad.”32 demann27 have described a range of common It is helpful to talk openly and candidly with the symptoms and behaviors, including initial numb­ patient and the family about the diagnosis, likely ness, disbelief, yearning, internal loss of self, rest­ course, and prognosis. At the same time, hope lessness, guilt, anger, anxiety, hallucinations of must be preserved for the patient as alternatives of the deceased, and adopting the deceased’s habits treatment are discussed. One needs to be sensitive or symptoms. In most instances, uncomplicated to the patient’s desires about the extent of detail grief lasts less than six months, is minimally dis­ wanted. Close follow-up with the patient and fam­ ruptive to normal activities, and rarely requires ily is then important, since further questions and psychiatric assistance.28 anxieties often arise after the initial conversation. Full discussion and informed consent are essen­ tial to selection of further diagnostic or therapeutic interventions so that they match the patient's Management needs and desires. The family physician can often The family physician, who in many cases has a play a key role in coordinating consultations, clari­ longstanding relationship with the family over a fying consultants’ findings and recommendations, period of years, can and should render invaluable and serving as the patient’s advocate should con­ care for the family dealing with a dying patient. sultants disagree about treatment. Based on knowledge of the family and past rela­ During follow-up visits as care of the terminal tionships with family members, the family physi­ illness and other medical problems proceeds, cian is in a good position to understand and other subjects should be gently raised when the

128 THE JOURNAL OF FAMILY PRACTICE, VOL. 17, NO. 1, 1983 DYING OF A FAMILY MEMBER patient and family seem ready. The most common others of an individual approach to dying, (4) relief fears that dying patients express are pain and of symptoms, and (5) physical care.38 Home care abandonment.33,34 These issues can often be ad­ offers many advantages if “carative” instead of dressed as treatment options are discussed. In this “curative” care has been decided upon and if context it is useful to discuss the options for loca­ other family members are able to take on the bur­ tion and type of terminal care (ie, hospital vs home dens of care. In many instances hospice care, visit­ care, with or without hospice support, “curative” ing nurse services, or other support services can vs “carative” care). The advantages and limita­ be mobilized to help provide terminal care at tions of a living will should be discussed (Appen­ home. In one recent study of the desires of pa­ dix). A tactful way of introducing this subject is tients with cancer, one half of the patients and one to say, “There may come a time when you become half of their family members selected the home as too ill to communicate with us about your medical the location of terminal care.38 Home care allows care; are there any specific instructions you might active participation by the family in personal and want us to follow at such a time?”35 Other subjects individualized terminal care of the dying patient, that may be discussed during the preterminal facilitates early grief work with the possibility of phase include the patient's desires concerning au­ decreased morbidity of surviving family members topsy and organ donations as well as plans for later, and avoids the discomfort and costs of more family and business affairs, including a will.36 One technologic hospital care. One recent study of the recent study showed that almost two thirds of pa­ billed charges for the last two weeks of care of tients in one family practice do not have wills and terminally ill patients with cancer showed that the that only one in ten would not be pleased to have cost of such care was more than ten times greater the physician inquire about the status of a will.37 for patients in a hospital than at home, and that It is worth noting that some life-threatening dis­ diagnostic and therapeutic interventions were eases, such as coronary heart disease, often in­ continued until the day of death for almost all volve sudden death or a relatively short trajectory inpatients.40 of dying. Freeman and his colleagues36 found that Control of pain is usually the highest priority physicians tend to neglect the above issues in pa­ expressed by dying patients and their families tients with possible short dying trajectories, regardless of where their care takes place. Some whereas they discuss these issues with patients patients with severe intractable pain may be candi­ with relatively long dying trajectories (eg, those dates for radiation therapy or a nerve block proce­ with cancer or other advanced chronic disease). dure. In most instances, however, a well-designed Such an approach will often deny patients with program of pain medication is effective. With short dying trajectories the benefits of adequate careful attention to the details of analgesia, excel­ personal and family preparation for the death. lent pain relief can be provided regardless of set­ ting. The most common error leading to inade­ quate analgesia is the failure to use high enough doses of the appropriate analgesic with sufficient Terminal Care frequency. It should be possible to provide a full Perhaps the most important single management night’s sleep without pain and to also provide decision having a major influence on the nature complete pain relief at rest in bed or in a chaii and process of terminal care is the choice of set­ during the day. If pain relief cannot be obtained ting for this care. Several options are available, with nonnarcotic or weak narcotic drugs such as including hospital, nursing home, and home care; codeine, oral morphine or methadone in aqueous hospice support is available in various forms in solution is the next logical step. Using similar dos­ a growing number of communities. The desires of ages morphine and methadone are equivalent in the patient and family in this choice should be potency, but methadone has the advantages of im­ weighed heavily and balanced with a realistic proved absorption orally and longer duration of assessment of what can be done for the patient s action (a half-life of 10 to 18 hours compared with illness and relief of symptoms in each setting. 5 hours for morphine).41 If the patient complains of Dying patients have five basic requirements: (1) continuous pain, analgesia should be given on a independence, (2) dignity, (3) acceptance by regular basis (every four hours for morphine or

129 THE JOURNAL OF FAMILY PRACTICE, VOL. 17, NO. 1, 1983 DYING OF A FAMILY MEMBER every six hours for methadone) and the first dose tus changes) and consideration should also be (usually 5 to 10 mg initially) should be increased by given to contributing psychosocial factors (eg, iso­ 50 percent at each subsequent dose until the pain lation, alienation from family or friends). Severe is controlled. The bedtime dose may be increased depression that cannot be resolved by correction up to double the usual dose and combined with a of underlying medical or psychosocial problems sedative as well, if necessary. Most patients with may be treated with an antidepressant. Consider­ severe continuous pain become pain-free with able success has been reported, for example, with doses of between 10 and 30 mg of morphine or the use of tricyclic antidepressants for depression methadone every four to six hours, respectively, associated with advanced cancer, especially in re­ although some will require more. Drowsiness may ducing such symptoms as sleeplessness, crying be experienced with early doses but clears for spells, and withdrawal while helping the patient to many patients when the dose has stabilized.42 relate more easily with other family members and Some kinds of pain may require adjuvant medi­ friends.48 cation in addition to a narcotic analgesic. A non­ Regular visits by the physician are important in steroidal anti-inflammatory drug is often helpful supporting the patient and family and in assuring for bone pain; a corticosteroid may be useful for that symptom control is maximally effective. It nerve compression pain or soft-tissue swelling or has often been shown that physicians tend to infiltration, and a muscle relaxant such as diaze­ shorten their visits and increasingly avoid the pam (Valium) may be used for muscle spasm. Hy­ dying patient the closer the patient gets to death.2 droxyzine (Vistaril) or promethazine (Phenergan) Instead, unhurried visits are essential, involving may also be helpful to relieve anxiety associated physical closeness (ie, sitting on the patient’s bed, with pain. Either may potentiate the effects of nar­ touching), empathy, active listening, and genuine cotics and may be used with morphine or metha­ concern expressed through such open-ended ques­ done in a “ pain cocktail” (eg, methadone and hy­ tions as “ Well, Mrs. Smith, what’s on your mind droxyzine in ’A-strength cherry syrup, 10 mL today?”47 The physician needs to support as best every six hours). The dosage of each should be he can the dignity and autonomy of the dying pa­ individualized to provide adequate analgesia with­ tient in a setting in which death may be as individ­ out undue drowsiness. ual in character as in life itself.48 Near and at the Nausea, which may result from the use of mor­ end, farewells are of therapeutic value, whether phine and methadone or from the underlying dis­ explicit or nonverbal and implicit.49 ease, may be treated with an antiemetic such as There is growing evidence that, in many cases, prochlorperazine (Compazine). Most patients re­ the funeral may serve as a positive experience for quiring regular doses of morphine become consti­ the surviving family members. The funeral cere­ pated. This may be treated with a stool softener mony provides the bereaved with some comfort (eg, docusate sodium—Colace), and if necessary that others are also involved in mourning, facili­ bisacodyl (Dulcolax) suppositories may be used in tates the grieving process, and recognizes the inte­ addition two or three times per week.42 If the pa­ gral worth and dignity of the life that has been tient is unable to clear secretions and appears to be lived.50'51 within 48 hours of death, 0.4 mg of atropine every 8 hours is effective in drying secretions.43 One needs to be alert to the possibility of de­ pression complicating terminal illness. The inci­ Follow-Up Care dence of depression in patients with cancer, for In view of the known increased prevalence of example, was found to be 37 percent in one study morbidity and even mortality in surviving family of randomly selected patients seen in radiother­ members after the death of an individual, it is apy,44 whereas 75 percent of patients admitted to essential to see the spouse or other appropriate an oncology research unit in another study were family members at periodic intervals thereafter. depressed.45 An underlying organic basis for Freeman and his colleagues consider that post­ symptoms of depression should be considered (eg, death care requires a minimum of two contacts hypokalemia, hypercalcemia, hypoglycemia, hy­ with the decreased patient’s family, the first be­ pothyroidism, hypoxia, drug-induced mental sta­ tween 1 and 3 months and the second at 6 to 24

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Table 1. Symptoms and Behaviors of Unresolved Grief*

1. A depressive syndrome of varying degree of severity beginning with the death 2. A history of delayed or prolonged grief 3. Symptoms of guilt, self-reproach, panic attacks, and somatic ex­ pressions of fear such as choking sensations and breathing attacks 4. Somatic symptoms representing identification with the dead per­ son, often the symptoms of the terminal illness 5. Physical distress under the upper half of the sternum accompanied by expressions such as "There is something stuck inside," or "I feel there is a demon inside of me" 6. Searching behavior 7. Recurrence of depressive symptoms and searching behavior on specific dates, such as anniversaries of the death, birthdays of the deceased, and holidays, especially Christmas 8. A feeling that the death occurred yesterday, even though the loss took place months or years ago 9. Unwillingness to move the material possessions of the deceased 10. Change in relationships following the death 11. Diminished participation in religious and ritual activities 12. The inability to discuss the deceased without crying or the voice cracking, particularly when the death occurred over one year be­ fore the interview 13. Themes of loss

*From Lazare28

months.36 At the first follow-up visit the family may be indicated for depression. Somatization support system and grieving should be discussed, complaints, panic disorder, or chronic pain com­ including clarification of any questions that may plaints in the bereavement period may be effectively have come up since the death. At the second visit alleviated by the early use of tricyclic antidepres­ discussion areas may include the impact of the sants.53 In some cases an extended pathologic grief death on other family members, sex, and remar­ reaction with severe dissociative, behavioral, or riage. The status of grieving should be carefully psychiatric symptoms will require referral for assessed and consideration given to the possibility more intensive psychotherapy and even hospitali­ of clinical depression. zation.54 In any event, counseling during the The differential diagnosis between normal bereavement process involves ventilation and grieving and depression is a challenging one, since support of the grieving family member in an effort the symptoms are quite similar. In both instances, to work through the grief period to a point where these symptoms include feelings of sadness, cry­ the surviving family is actively engaged with the ing, narrowed interests, illusionary experiences next stage of their lives. Grief work involves three and dreams, and disturbed sleep. In grief, these basic elements: catharsis, reconstruction, and symptoms tend to come and go. In depression, reintegration. For the average adult, it takes be­ however, there is a persistent quality to these tween 18 and 24 months before this process is symptoms, which may also be associated with complete.55 It is useful to inquire into details of the suicidal ideation.52 Table 1 lists a number of symp­ death or recollections of the lost family member to toms and behaviors that may be found in unre­ facilitate the process of catharsis. Visits to the solved grief.28 cemetery may be encouraged as well as talking Time-limited follow-up visits for supportive about the loss with friends.28 psychotherapy, with or without an antidepressant, By way of summary, Table 2 presents a variety

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Table 2. Stage-Related Considerations in the Care of the Dying Family Member

Stage Consideration

Preterminal Communication with patient and family concerning: Care Diagnosis, treatment options, prognosis Directive to physician; living will Personal and family preparations for death Desires concerning autopsy, organ donor programs Desired setting for terminal care Diagnostic and therapeutic interventions as desired and indicated Regular physician visits

Terminal Care Location of terminal care "Carative" vs "curative" care "No code" if in hospital Family support system Social service, nursing, hospice support services Control of symptoms (pain, nausea, constipation, depression, etc) Regular physician visits: empathy, active listening, touch, support Facilitation of farewells Autopsy, if desired Viewing of body; funeral arrangements

Follow-Up Care Initial family support after death: sedation, clarification of autopsy findings, assess status of surviving family members Later visit(s) to assess extent and resolution of grief reaction, identify and treat depression, and discuss other issues (eg, family planning, sex, remarriage)

of considerations to be addressed in preterminal, some manner and many feel isolated and lonely if terminal, and follow-up care. not given that opportunity.16 Separation anxiety in particular needs to be dealt with in the care of the dying child. The child especially fears separation from loved ones and Child and Neonatal Death should be assured that he will not be alone. After The same general principles relating to dying the death, siblings more than six years of age adult patients also apply to the dying child and should be encouraged to go to the funeral, since newborn, but some additional comments should this is often preferable to fantasies that may be made in the case of children and infants. otherwise develop concerning the death.16 In the case of a child with terminal illness, open In the case of neonatal death, it has been found communication is usually helpful. Many children that friends and relatives are often not supportive four years of age and older are quite aware when of families experiencing such a loss because they they have a serious illness. Although some will perceive the baby as replaceable and its loss as deny the disease, many will want to discuss it in causing little need for grief.36 In this instance,

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viewing and touching the dead infant helps the born. Postgrad Med 60:67, 1976 19. Young M, Benjamin B, Wallis C: Mortality of wid­ mother to cope without fantasizing with the reality owers. Lancet 2:454, 1963 of death.17 The cause of death should be explained 20. Parkes CM, Benjamin B, Fitzgerald RG: Broken heart: A statistical study of increased mortality among clearly to the parents and repeated as needed. Au­ widowers. Br Med J 1:740, 1969 topsy findings are frequently helpful in defusing 21. McMahon B, Pugh TF: Suicide in the widowed. Am J Epidemiol 81:23, 1965 the guilt that the parents may feel. Breast care is 22. Helsing KJ, Syklo M: Mortality after bereavement. important, and breast binding, ice compresses, Am J Epidemiol 114:41, 1981 23. Clayton PJ: The clinical morbidity of the first year of and analgesia are usually sufficient. For more bereavement: A review. Compr Psychiatry 14:151, 1973 painful breast engorgement, bromocriptine mes­ 24. Lock SE: Stress, adaptation and immunity: Studies in humans. Gen Hosp Psychiatry 4:49, 1982 ylate (Parlodel) is effective. Early discharge from 25. Parkes CM: Bereavement: Studies of Grief in Adult the hospital should also be considered.18 Life. New York, International Universities Press, 1972 26. Parkes CM: The first year of bereavement: A longi­ After death of an infant, the parents often ex­ tudinal study of the reaction of London widows to the death perience an intense grief reaction. Parent support of their husbands. Psychiatry 33:444, 1971 27. Lindemann E: The symptomatology and manage­ groups may be quite helpful for parents losing a ment of acute grief. Am J Psychiatry 101:141, 1944 child through the sudden infant death syndrome. 28. Lazare A: Unresolved grief. In Lazare E (ed): Outpa­ tient Psychiatry: Diagnosis and Treatment. Baltimore, Family planning is important for at least 9 to Williams & Wilkins, 1979, p 498 12 months to avoid the replacement child syn­ 29. Oken D: What to tell cancer patients: A study of medical attitudes. JAMA 175:1120, 1961 drome,57 but discussion of tubal ligation, if it had 30. Samp RJ, Curreri AR: A questionnaire survey on been contemplated, should be deferred until the public cancer education obtained from cancer patients and their families. Cancer 10:382, 1957 grief reaction has resolved.18 A follow-up meeting 31. Branch CH: Psychiatric aspects of malignant dis­ with the parents is advisable one week after the ease. CA 6:102, 1956 32. Veatch RM: Caring for the dying person—Ethical is­ infant’s death, with a second follow-up visit three sues at stake. In Barton D (ed): Dying and Death: A Clinical to six months later to assess the resolution of grief Guide for Caregivers. Baltimore, Williams & Wilkins, 1977, p 150 reaction and to offer whatever supportive care 33. Dunphy JE: On caring for the patient with cancer, might be needed at that time.49 annual discourse. N Engl J Med 295:313, 1976 34. 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Appendix

Directive to Physicians Directive made this ______day of______(month, year). I ------, being of sound m ind, w illfu lly and vo lu n ta rily make known my desire that my life shall not be artificially prolonged under the circumstances set forth below, and do hereby declare that: (a) If at any time I should have an incurable injury, disease, or illness certified to be a terminal condition by two physicians, and where the application of life-sustaining procedures would serve only to artificially prolong the moment of my death and where my physician determines that my death is imminent whether or not life-sustaining procedures are utilized, I direct that such procedures be withheld or withdrawn, and that I be permitted to die naturally. (b) In the absence of my ability to give directions regarding the use of such life-sustaining procedures, it is my intention that this directive shall be honored by my family and physician(s) as the final expression of my legal right to refuse medical or surgical treatment and I accept the consequences from such refusal. (c) If I have been diagnosed as pregnant and that diagnosis is known to my physician, this directive shall have no force of effect during the course of my pregnancy. (d) I understand the full import of this directive and I am emotionally and mentally competent to make this directive.

S ig n e d ______

Social Security Number or Birthdate ______

Street Address______City, County, and State of Residence______

W itness

This directive must be signed by two witnesses. The following persons m a y n o t serve as witnesses: (a) anyone related to the declarer by blood or marriage, (b) anyone entitled to a part of the declarer's estate, by will or otherwise, (3) anyone with a claim against the declarer's estate, (d) the declarer's attending physician, or any of the physician's employees, (e) the employee of a health facility (hospital or nursing home) in which the declarer is a patient.

*****

The declarer has been personally known to me and I believe him or her to be of sound mind.

W itn e ss______W itn e ss______W itn e ss______W itn e ss ______

This directive complies with the Natural Death Act, chapter 112, Washington Laws of 1979. However, additional specific directions may be included by the declarer.

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