The Gynecologist and the Dying Patient
Deborah S. Lyon, Guy I. Benrubi and Marghani M. Reever
Table Of Contents
Deborah S. Lyon, MD
Guy I. Benrubi, MD
Marghani M. Reever, PhD
COMMUNICATION WITH THE PATIENT|
WHEN DEATH IS SUDDEN
COMMUNICATION WITH THE FAMILY
COMMUNICATING WITH CHILDREN
COMMUNICATING WITH ADOLESCENTS
COMMUNICATION AFTER A SUDDEN LOSS
COMMUNICATION WHEN A MISHAP HAS OCCURRED
COMMUNICATING WITHIN THE TEAM
TEACHING HOUSE OFFICERS TO COMMUNICATE WITH DYING PATIENTS
Obstetrics and gynecology is often viewed as a happy specialty by its practitioners as well as others. Most of our tasks center around health maintenance and relief of short-term illnesses or conditions. Many gynecologists selected this field, at least in part, because of these very characteristics. Yet we are inevitably faced with dying patients and inescapably responsible for their care and comfort. As gynecologists in the United States, we are directly involved annually in the care of approximately 27,000 to 30,000 women who die from diseases of the female reproductive tract. The very mismatch between our routine tasks and this burden makes it more difficult for us than for our colleagues in other specialties to deal appropriately with death.
Modern society is not our ally in this effort. In the era preceding the advent of modern medicine, death was understood as inevitable and as a transitional phase of existence. In contemporary Western culture, death is often ignored, disguised, defined away, or blamed on some person or event, in every way discredited as a natural stage of life. The challenge of the gynecologist confronted with a patient's impending demise is to provide support and comfort within a context acceptable to the patient, her family, the support team, and the physician.
This chapter focuses on the various aspects of the gynecologist's support of the patient and her family during the dying process. The first section of the chapter reviews communication between the physician and the patient and her family. The second section focuses on interventions at the end of life that have become issues for discussion in our society. These include appropriate pain control, hospice care, and death with dignity.
|COMMUNICATION WITH THE PATIENT|
Discussing death with patients is a difficult task. This communication skill is not well covered in medical school curricula and is rarely emphasized in the residency environment. Although there is a growing recognition that a more structured educational experience is of value, the optimal methodology has yet to be fully defined.1,2 A multitude of written sources of guidance exist, but they are often not accessible physically or cognitively to the physician at the time when they are most needed.3,4
In discussing medical issues with a cancer patient, a major concern is how much to tell the patient about her disease, treatment, and prognosis. The ethical principle of beneficence was once dominant in health care, but this principle has become secondary to that of autonomy. This results in full disclosure of all pertinent issues. The patient is then supported in choosing a path of personal best fit. Although both ethical principles endorse values strongly held in our society, they can often be in conflict. Thus, many physicians support a more patriarchal approach to patient communication in practice than is endorsed in our literature. Transmitting information that is factual but not necessarily complete, most caregivers have found some middle ground in which each of these principles can be respected without abandoning the other.
As with any issue of medical concern, communicating the medical facts cannot take place in a vacuum that disregards the rest of the patient's life: intellect, level of education, social support system, emotional stability, cultural background, and so forth.5,6 We evaluate this framework on an everyday basis when communicating diagnoses and therapeutic options, and although our assessment skills are no doubt imperfect, they are the foundation for all successful subsequent communication.
In her classic work on the subject, Elisabeth Kubler-Ross defined a series of stages that most patients traverse when confronted with death.7 Understanding these stages enables a caring gynecologist to communicate with the dying patient, and Kubler-Ross' work should be reviewed in detail by all physicians. She defines five stages experienced by the dying patient: denial, anger, bargaining, depression, and acceptance. Not all patients go through all five stages, and the length of each stage varies with patients. There may be movement back and forth between stages, depending on the progress of the disease and treatment. Nevertheless, these are predictable and useful concepts in designing communication strategies. For example, if the patient is embroiled in denial, a detailed discussion of future therapeutic interventions is not likely to be useful, and recognizing bargaining behavior as a normal stage may decrease physician frustration with the irrational patient.
An understanding of differences in the basic communication styles of patients and physicians is also helpful. Physicians tend to think in terms of statistical pools of information regarding response rates, survival curves, side effect profiles, and so on. Patients, however, are understandably egocentric in their concerns and have much less interest in how many out of 1000 patients respond to this treatment than in how they will. Thus, the physician may quote an 80% 5-year survival rate and be nonplussed by a patient's response of, “Give it to me straight, Doc: how long have I got?” It is important to discuss the patient's disease in terms she can understand and synthesize. In communicating with cancer patients, Meyerowitz and associates8 describe several significant stages of the patient's disease process and suggest specific interventions for each. These stages are first diagnosis, initiation of treatment, remission or cure, recurrence, and dying. The authors emphasize early assessment of the degree to which the patient desires autonomy (i.e., full disclosure) versus beneficence to be the most valued principle in her interactions with her caregivers. They recommend open-ended questions such as, “How much do you want to know about your illness?” Another technique is to respond to patient questions without volunteering large amounts of information that are not solicited. This should be performed in a relaxed environment in which the patient is given permission to ask anything that concerns her. A possible approach is to ask the patient if she has as much information about her illness as she would like to have.9
Meyerowitz and associates note that many patients are confronted with a difficult diagnosis and set of therapeutic decisions just at a time when they are also struggling to adjust to a new physician relationship. The reverse is also true: the physician is obliged to learn a great deal about the patient in a short period of time while responsibly caring for her immediate needs and further care. Help may be available from the patient's family or primary care physician regarding her coping skills, but the best source of information is the patient herself. Meyerowitz and colleagues also emphasize the importance of allowing the patient to control the communication and treatment. Even patients who do not wish to know all the details of their disease should still be included in planning and treatment strategies that suit their needs. It is critical to remember that many patients cannot assimilate large amounts of threatening and overwhelming information at one time. It is not unusual for patients to claim, “The doctor never told me this!” at various stages of their illness. Frequent repetition and reassurance are important in repeat contacts with the patient.
Certain times in the course of cancer management deserve special attention. Many patients become anxious or depressed as the prescribed course of treatment draws to a close. They may fear recurrence once the disease-fighting mechanisms are withdrawn, or they may sense a loss of support from the frequent contact with caregivers during chemotherapy or radiation. Diagnosis of recurrence may be the time of highest stress. For many patients, the initial diagnosis carries at least some hope of successful survival, and many pay a very high price in terms of side effects from treatment to ensure their survival. The diagnosis of recurrence may reinitiate all of Kubler-Ross' stages of grief. It may even be more stressful than dying itself. This stage is the most difficult. It requires from the physician a communicative skill that maintains a delicate balance between fact and hope.
When death appears to be inevitable, the physician must find ways of exploring the patient's wishes regarding experimental salvage therapy, advance directives, place of death, and involvement of family. Deciding to quit fighting is rarely a clear-cut, universally obvious choice, and often there is disagreement among the patient, her family, and her caregivers. Nevertheless, avoiding these topics may lead to many tragedies that will make the patient's death more difficult and traumatic for all concerned. All too often, weekend staff members are left discussing these concerns with the patient and family to whom they are complete strangers, because of faulty communication with the patient's primary care team.
|WHEN DEATH IS SUDDEN|
All of the aforementioned issues relate to death that is relatively predictable and slow in coming. When a patient confronts death more suddenly, such as with a massive amniotic fluid embolus or a major cardiac event during surgery, communication may be both more difficult and more important. Failures and omissions in the counseling of the cancer patient can be later redeemed in further conversation. This luxury is not available with the patient who undergoes an immediate and unexpected demise. There is essentially no written guidance regarding communication in this setting. Perhaps the best that can be hoped for is consistent support of the patient and her family with physical presence and honest answers. The assurance of adequate pain relief and assistance with the details of moving through all five emotional stages, as well as through the physical logistics of dying, may be of great comfort to the patient. All efforts should be made to provide services such as chaplain care and legal consultation for drafting a will, when time permits.
|COMMUNICATION WITH THE FAMILY|
In most physician–patient interactions, there is minimal direct communication between the physician and the family. Principles of autonomy and privacy that have become prevalent in our training, coupled with new and stringent governmental restrictions on dissemination of protected health information, may lead us to consciously or unconsciously exclude family members from our communication. In the case of the dying patient, however, the family generally cannot and often should not be excluded from communication. It is critical to discuss with the patient early in the course of her disease which members of her family are most trusted and to what degree she wishes them to be involved in discussions of her condition. Physicians often discuss treatment plans and goals, but they may neglect other aspects of chronic disease management of concern to the patient. Understanding issues that are important to both the patient and her family are important aspects of quality of care and may include such concerns as pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, being treated as a whole person, being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God.10
Family members often attempt to provide support in inept and sometimes conflicting ways, and balancing the needs of the patient while recognizing the capacities and limitations of family members becomes crucial in treatment planning.11 They should be discouraged from pre-empting the patient's autonomy, even when her decisions might not be what other family members consider optimal. They should also be taught not to exclude the patient from conversations about her, because this serves to alienate and intimidate rather than protect. They should be encouraged to allow the patient to move through all the stages of dying, including the less pleasant ones of anger and depression. When terminal care is being provided primarily at home, a thorough discussion with the family of expected symptoms is mandatory. All too frequently, panicked family members rush terminally ill patients to the hospital for worsening but expected conditions.
Discussions with family members should not exclude the patient, unless she specifically indicates, either by statement or by implication, that she wishes to be excluded. Family members certainly need to know what to expect from the disease. Many details of dying occur outside the hospital, and issues such as arrangement for care of minor children, completion of a will, and spiritual counseling must be conducted by concerned family members in a setting of appropriate information.
Family members may traverse the same stages of grief as the patient. There is often denial, anger, or bargaining, which can be very distracting to the team caring for the patient. Each support person may move through these stages at different rates, making physician–family communication a veritable minefield. Cancer is the ultimate loss of control over life. Family members who are goal-oriented and focused can initially be the most difficult to deal with in these overwhelming situations; after all, this may be the first time in their lives that they have lost control. With proper patience, they often become the most valuable adjuncts to the terminal patient's care. Supportive and honest communication can go far in aiding family members through these stages and into appropriate acceptance of the situation.
When the patient dies, the responsibility of the physician to the family does not abruptly end. A recent focus of attention in the arena of critical care has been on families of the critically ill and how to better meet their needs.12 A grieving husband may ask for something to help him sleep. A previously distant child may appear with unanswered questions. A sister may question why certain aspects of the patient's care were not managed differently. Honest and gentle communication can go a long way to defuse frustrations and allow healthy grieving. Prescribing heavy tranquilizers with amnestic potential is discouraged, because use of these medications may actually slow the transition through grief. A mild narcoleptic may be of benefit, however. A 1993 article in the American Journal of Nursing13 suggests the following advice for dealing with family loss: listen more than talk; use the word death instead of euphemisms; refrain from platitudes; do not stifle grief; connect the family with other sources of support; give the family time to grieve individually; and take care of yourself in your own grieving.
|COMMUNICATING WITH CHILDREN|
Children vaguely understand the concept of death by approximately age 3 and can deal with the concrete concerns of irreversibility, finality, inevitability, and causality by approximately age 5 to 7 years.14 However, even very young children experience loss when permanently deprived of the presence of a loved one. Cognitive skills are highly variable, and most children regress to some degree under stress. They may think in very concrete terms and easily misinterpret comments, especially ones phrased euphemistically or cryptically. Even more than adults, children tend to feel blame for a loved one's death. Children should be given time and careful attention when a close family member dies. Physicians may not be the appropriate people to have these discussions, but they may be asked by adult family members for advice. Like adults, children should be allowed to grieve and should not be stifled or hushed. Frank and gentle discussions, using examples a child can understand (death of a pet, cycles of nature, loss of a loved toy), are of value. Children may appear to move through grief more quickly than adults, but they often revisit stages of grieving as they gain maturity and cognitive skills. It may take years for a child to reach true acceptance of the loss.
|COMMUNICATING WITH ADOLESCENTS|
Adolescents may be the least equipped for dealing with grief. This is an age of intense self-awareness and self-concern, with developmental tasks of separation from family, coming to grips with personal body image, and learning individual peer interaction styles. Although cognitively able to understand death, adolescents may lack the emotional maturity to interpret and manage their losses. In fact, some insight into adolescents' views can be gained from a review of death as seen in rock-and-roll music.15 Death occupies a disproportionately high frequency in Top 40 music compared with other topics, but it is seen as deserved, the result of calculated risk, or not final. There is minimal evidence of life as dear and death as a stage of every life. Popular music reflects numerous behavioral responses to death, from committing suicide to writing a song, but a paucity of emotional response. In virtually every song analyzed, the death appears to affect only one survivor. Escape and avoidance are viewed as appropriate models in these lyrics. This carefully constructed survey of adolescent music from 1955 through 1991 suggests that teens may be vastly underprepared for the realities of death. As with children, finding ways of connecting to the actual experience of adolescents in exploring their fears and questions may help in achieving a more realistic scope of appropriate grief.
|COMMUNICATION AFTER A SUDDEN LOSS|
Dealing with the family of a dead patient is particularly difficult when the loss was unexpected, such as during surgery or childbirth. In some cases, there has been no opportunity to discuss the situation with the patient at all. The family may not even be known to the physician, and neither the family nor the physician is emotionally or cognitively prepared to deal with the issues surrounding death.
If the patient had significant risk factors, such as known coronary artery disease, some discussion of the possibility of death should have been part of the informed consent for the procedure. Some physicians are reluctant to deal with counseling regarding death as a possible complication of intervention. Far from alienating patients, however, it allows them to understand the full spectrum of possible outcomes. Many medicolegal experts recommend at least the mention of death in the preoperative note of all patients. When its likelihood is remote, it can be appropriately downplayed (“Of course, you took a risk of death just coming here to see me today, but this is a commonly accepted risk that we take as part of everyday life”), but its mention may serve to prepare the patient or family for the unexpected.
In any case, with no real warning for any of the involved parties, the many stages of grief are likely to be jumbled, and this situation may indeed be more stressful on the physician and the survivors than the more orderly demise of a cancer patient. The wise physician will recognize sudden denial, anger, blame, uncommunicativeness, and repetitive questioning as coping mechanisms rather than challenges and will deal with these reactions in a way that affirms the shock of the loss and allows the family to grieve in its own way.16 This is even more difficult because the physician is also undergoing a grief response, varying from simple academic disbelief to a full loss reaction, depending on the previous relationship with the patient. It may take several interviews with the family to resolve all the issues. Although inconvenient and often uncomfortable, time taken in the office several days after the death may serve to relieve fear, diffuse anger, and restore trust on the part of family members.
|COMMUNICATION WHEN A MISHAP HAS OCCURRED|
Often when death is unexpected, there is a question, or even evidence, of suboptimal medical management. Hospital legal counsel will usually advise minimizing the information given regarding the mishap and will absolutely condemn the verbal acknowledgment by the physician of any personal or collective error. However, one of the most commonly quoted reasons for initiating litigation is dissatisfaction with physician communication and the desire to know what really happened.17 Thus, it is in the best interest of all parties to be as honest and complete as possible regarding the explanation of the death while complying with the requirements of legal counsel. An explanation of what happened can usually be couched in terms that avoid placing blame while still providing information. If a family member asks, “Was this because someone did something wrong?”, a possible answer is to acknowledge that other management options might have been selected, but what was performed was in good faith, believing it was in the patient's best interest. Obviously, each situation must be individually managed regarding the amount of disclosure, and involvement of legal counsel and risk managers should be prompt. Nevertheless, the obligation of the physician to provide comfort and information is not waived when iatrogenic harm has occurred.
|COMMUNICATING WITHIN THE TEAM|
The model of the single physician as caregiver is rare in today's practice environment. In a private practice, there is cross-coverage by partners or colleagues. In an academic setting, several residents and usually more than one specialty are involved in the care of a terminally ill patient. In addition to physicians, a host of nurses, therapists, technicians, social workers, pharmacists, and chaplains may be involved in providing information and comfort to the patient. It is essential to the well-being of the patient as well as to the smooth provision of services that information given by all these people be in harmony.
Often the primary caregiver (gynecologic oncologist or generalist) has information regarding a patient's emotional status or family problems that is of vital interest in caring for her, but the primary caregiver may not effectively communicate this information to the other caregivers involved. This may result in mixed messages and real disasters in terms of patient well-being. Team communication is most important in times of change in the patient's therapeutic regimen and status. Do not resuscitate (DNR) orders and advance directives should be clear. If a patient is terminally ill but DNR orders have not been written because of patient or family desires for active intervention, this should be made clear so that other caregivers may understand remaining ambivalence or conflict. All too often, the topic is simply not addressed by the person most qualified to do so, leaving other caregivers with the risk of having to provide inappropriate care in the event of a sudden shift in patient status.
The primary caregiver should provide a personal summary of the current management plan as the first entry in the inpatient chart of hospitalized cancer or other very ill patients. This need not be extensive, and it may be copied and reused if there are frequent readmissions with no real change in the essential information. This summary should list special concerns, such as a grandmother who has been excluded from receiving information or a sibling who disagrees with a DNR order, or that the patient is in denial of her recurrence and will not consent to any procedure unless told it is for a benign indication. These details have no niche in the conventional history and physical examination but are vital to the seamless care of the patient.
|TEACHING HOUSE OFFICERS TO COMMUNICATE WITH DYING PATIENTS|
Residents and medical students are generally young and may have never experienced the death of someone dear. Thus, they may be extremely uncomfortable in the presence of death and dying. Responses may vary from deliberate distancing to deep personal grief over patient death. In July 1997, 65% of the entering postgraduate year-1 residents in obstetrics and gynecology were women.18 These young women, many of whom entered the specialty because of its happy nature, face the difficult prospect of having to deal with patients often close to their age who are dying from genital cancer. Avoidance, therefore, is not an unnatural response. One of the greatest gifts teaching physicians can give their patients is to teach medical learners to interact with these patients comfortably and effectively.
Learners should be encouraged to spend time with terminally ill patients (unless the patient has specifically requested minimal involvement). Many terminally ill patients experience profound loneliness but do not wish to trouble family or friends or are embarrassed to be seen in a debilitated state. In addition to providing comfort to the patient, students may find a tremendous source of education in their patients. A quiet conversation after evening rounds or when called to assess a relatively minor symptom may be the learner's opportunity to gain insight into the fears and strengths of patients.
Many times the supervising physician has heavy commitments outside the hospital or ward and may often be unavoidably unavailable for the patient. House staff, however, are still primarily hospital-based and might find it easier to find time for a nonmedically directed conversation with a terminally ill patient. Students may be assigned the task of evaluating the patient's psychosocial support. In this way, they can be encouraged to assess these concerns and to develop rapport with the patient that may extend long beyond their allotted rotation.
There is a potential drawback to learner involvement, however. The same inexperience that leads house officers to avoid dying patients may also become a handicap in involving them if good team communication is not maintained. The young resident may be uncomfortable allowing a patient to progress through denial and may feel obligated to help her understand her disease. The senior resident, with the task of supervising a busy obstetric and gynecologic service, may be hasty in presuming that an oncology patient should not be promptly or fully resuscitated, even though the patient might still have many months of life expectancy or may have expressed deep concern about surviving a particular milestone. Thus, the value to the patient of having active house staff involvement in her care remains only if the house officer is truly a valued and integrated member of the caregiving team. Didactic education and case discussion should provide the student and resident with growing interaction skills that then may be implemented at the bedside.
Consensus has been achieved in the United States that all patients deserve to die a dignified death. There is, however, acrimonious debate as to precisely which interventions are allowable and necessary to achieve this universally accepted goal. These concerns have lead to discussions about appropriate pain control at the end of life, supportive care in a dignified setting such as hospice, and death with dignity, including debate on withdrawal of care, assisted suicide, and active euthanasia.
Just as there is consensus that patients must be given the opportunity of a peaceful and dignified death, there is agreement within the medical profession that many patients with intractable pain are not administered adequate analgesia for their symptoms. The causes of this inappropriate care are many. Society has placed a great emphasis on prevention of illegal use of controlled substances. Therefore, physicians and pharmacists are encouraged not to overprescribe these medications. Multiple data banks exist that track prescription use by physicians and patients. Many physicians treating terminal patients in severe pain have been visited by regulatory authorities who question the amount of narcotic medication that has been prescribed. The net result is that physicians, in trying to avoid these unpleasant encounters, underprescribe for and undermedicate their patients.
Technological advances are now available that should preclude much of the suffering of cancer patients. Narcotic analgesia can now be administered by a long-acting oral form, a dermal patch, or central nervous system injections. In addition, new and potent medications are available for the control of nausea, constipation, or other severe complications of narcotic medication. Pain control can further be enhanced by combining medications such as nonsteroidal anti-inflammatory agents with narcotic analgesia. The use of long-acting forms of these medications provides for the continuous presence of the agent, which is a more efficient method of pain control than treating symptoms when they occur.
End-of-life pain is a complex and intricate clinical entity. It should be approached with the same commitment to team effort and collegial consultation as the patient's initial disease. When the patient first presents with her diagnosis of malignancy, there is usually no reluctance to consult, in combination when necessary, surgical, medical, and radiation oncologists. However, not infrequently, once the decision to stop active treatment of the cancer is made, the team approach is abandoned. What should be retained in focus is that active treatment of the patient should not end once the disease is no longer curable. A team approach to cancer pain can be highly efficacious. Pain services as divisions of anesthesiology departments are now available in many hospitals and group practices. Their involvement early in the disease can often eliminate months of suffering. Radiation treatment, especially of bone metastases, is an effective and rapid method of pain relief. Adjunctive treatment of depression with medication or counseling potentiates analgesic medication.
An often enunciated concern of terminal patients is their fear of addiction. In a sense, this concern can be interpreted as a subliminal message of hope. After all, if the patient truly believes her disease is terminal, then why would addiction be an issue? It is also an example of how ingrained habits and responses are maintained even by terminal patients. The physician's reaction to this concern should be delicate. The reflexive answer, What difference does it make?!, should be suppressed. Rather, the patient should be reassured that patients with severe pain rarely, if ever, become addicted to narcotic medication. The patient should be encouraged not to be heroic, but to ingest the requisite amount of medication for pain relief.
The concept of hospice care has been in existence for hundreds if not thousands of years. The first modern hospice was St. Christopher's in London in the 1960s, under the direction of Dame Cecily Saunders. The goal of the hospice program was to provide quality care for the terminally ill patient, at home if possible, and for as long as possible. The second goal was to maintain the patient as free from pain as possible. The concept was to involve the family as well as paramedical personnel in a global approach to the care of the dying patient. The first hospice in the United States was established in 1974. Currently, there are more than 2000 hospice programs in this country, with many more in planning stages.
The hospice concept is a direct effort to overcome a deficit in traditional medicine in the United States. The deficit is in our understanding that aggressive efforts for comfort should not be terminated once curative efforts are no longer effective. It deals with the concern that, understandably, the primary focus of the physician and the hospital is the cure or reversal of the disease process. It therefore stands to reason that when that process is no longer possible, other facilities need to be available to deliver the comfort care needed when curative methods have failed.
Many hospice programs have admitting facilities for the last 2 weeks of anticipated life. However, most programs are based on home care and involve relatives to provide the care as much as possible. The most important issue involving hospice care is the timing of the referral by the gynecologist once the decision is made to stop active treatment of the disease. A common problem with gynecologic malignancies is that despite the failure of multiple regimens of chemotherapy, the patient continues to ask for, and the physician often is willing to give, additional therapeutic interventions, even though the statistical chance for remission is very small. A decision has to be made by the gynecologist as to when to encourage the patient to allow herself to be referred to hospice. The issue can become delicate, because at that moment the patient has to face the inevitability of her impending death. The physician's role is to help the patient appropriately face this issue and to provide adequate information and support.
A frequent concern of the treating physician is that once the care is turned over to the hospice program, the physician will lose control of the patient. Most hospice programs in this country operate under the premise that the physician can, if desired, be in control of all patient care decisions. Physicians, however, have the option to relinquish pain management as well as total care to the medical director of the hospice program. Hospice medical directors are well trained in caring for patients at the end of life and should be seen as valuable consultants for this stage of disease.
Some physicians are concerned that the patient may feel that they have abandoned her by referring to hospice, but in the majority of cases this is not so. The patient usually is grateful that a knowledgeable team of health care providers has now been included in her care.
Questions exist as to whether patients who are still undergoing chemotherapy or radiation can be admitted to hospice programs. In most hospice situations, patients are admitted to the program only after a decision is made that active treatment of the disease for cure is no longer being attempted. However, in some situations, radiation therapy and chemotherapy are administered for totally palliative reasons; therefore, under certain circumstances, patients who are still undergoing these treatments may be admitted to hospice programs.
Today in the United States, the issue of predominant concern in health care, unfortunately, has become cost-effectiveness. It is therefore important to decide whether hospice care is cost-effective. Several analyses exist in the literature on the cost of health care in the last year and last month of life. One study noted that approximately 5% to 6% of Medicare enrollees die each year; however, this same group accounts for 25% to 30% of Medicare payments.19 An estimated one third of Medicare dollars are spent providing health care during the last year of life. Furthermore, of all expenses during the last year of life, 60% are incurred during the last 90 days.
A review of the literature points to the reasons why end-of-life health care is so expensive, as well as to potential ways to decrease this cost. A 1995 article in the Journal of the American Medical Association reported the results of a study called A Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).20 This study examined ways to improve medical decision-making at the end of life and possibly to reduce mechanical and painful interventions that prolong the process of dying. The study concluded that in most cases, physicians were unaware of the patient's desire not to have resuscitative efforts, and even when the physicians became aware of the patient's wishes, in most cases they did not change their habit of active intervention. The study concluded that possibly 1 million patients per year who meet the SUPPORT criteria may be subjected to interventions that are not only nonefficacious but also unwanted by the patient. One can reasonably conclude that if a patient is admitted to a hospital for end-of-life care, the interventions frequently will be aggressive, unnecessary, and unwanted. It is easy to see that a more cost-effective way for providing this care would be in a nonhospital setting where the focus would not be extraordinary intervention, but rather ordinary means for symptom relief and pain control. Several additional studies in the literature support the cost-effectiveness of hospice care.
Although to many providers the rationale for hospice is clear-cut, there is a vast underuse of hospice services in the United States. Most of this is because of ignorance on the part of providers about the availability and best use of hospice services. In an article in 1994 in the Maryland Medical Journal, the problem was stated as follows: “Much of medical education is devoted to curing disease. Surprisingly little formal attention is given to the dying process and how physicians can best care for dying patients and their families. . . Access is limited primarily by ignorance, on the part of both health care professionals and the public, about hospice availability and purpose.”21
Death With Dignity
During the past two decades, an intense discussion has taken place as to the appropriate role of the physician confronted by a dying patient who wants help in terminating a pain-ravaged and tortured existence. Medical, legal, social, and ethical thought has evolved markedly during these 20 years. In the 1970s, there was intense debate as to whether supportive methods could be withdrawn from a person in a persistent vegetative state, such as that of Karen Quinlan. The Supreme Court has settled the legal debate by asserting that the patient's autonomy is the guiding principle in such cases. It ruled that as long as there are clear advance directives, the state's interest is not compelling, and the state cannot force medical intervention. This is reflected in the medical–ethical discussions in which, by and large, there is concurrence that withdrawal or withholding of life support, although it results in the patient's death, is neither active euthanasia nor assisted suicide.
The debate on patient demand for assisted suicide now has achieved the level of intensity that withdrawal of extraordinary care had two decades ago. Before recent advances with antiviral therapy, the debate was fueled by the AIDS epidemic and the resultant unremittingly savage deaths caused by this disease. With legislators reluctant to take the lead, the public has resorted to methods of direct democracy, including voter initiatives, jury nullification, and judicial petition. Many voter initiatives have been placed on ballots in states, including Oregon, Washington, California, and New Mexico. The only successful one has been in Oregon, although the other initiatives lost by narrow margins, validating the impression that public opinion is approximately evenly split on the issue of assisted suicide. Interestingly, although national and most local associations of organized medicine have opposed physician-assisted suicide, the New Mexico Medical Association took a neutral stand.
The public ambivalence on this issue is further demonstrated by the court experience of Dr. Jack Kevorkian. Most medical ethicists who support assisted suicide agree that Dr. Kevorkian's methods are precisely the reason to be concerned with the legalization of this practice. He foregoes any and all procedural safeguards that would reassure doubters that we will not descend a slippery slope if the practice were legalized. But although many prosecuting attorneys have tried, they have yet to find a jury to convict Dr. Kevorkian. This is a striking example of jury nullification of a law that the public finds unjust.
In June 1997, the United States Supreme Court ruled on two cases, one from Washington and the other from New York State, regarding whether there is an implied constitutional right to assisted suicide. Although the Supreme Court denied the concept, it left the door open for future reconsideration. Writing in the majority opinion, Chief Justice William Rehnquist specifically suggested that at least some terminally ill people in intractable pain might be able to claim in the future that they had a constitutional right to a doctor's assistance in hastening their death. As Rehnquist wrote, “Our opinion does not absolutely foreclose such a claim.”22
Most medical ethicists clearly distinguish the concept of withdrawal of terminal care from that of active euthanasia, which is a deliberate termination of the patient's life to prevent further suffering. Arguments for the legalization of active euthanasia center on the magnitude of suffering and the autonomy of the patient. Arguments against it center on the sanctity of life and on the disruptive and dislocating social result if the taboo against killing were to be disregarded, even in cases in which suffering would be alleviated. As described by one of the authors in the New England Journal of Medicine:23
The situation is analogous to that of the parent who encourages a child to climb higher and higher up a tree, telling the child to climb forever upward without fear, until the highest branch is reached. Finally, the child arrives at the top of the tree but cannot get down without the parent's help. At that point the parent says, “I am sorry, I got you up there, but I will not help you down.”
The crux of the debate over euthanasia is between two diametrically opposed concepts. One is that if we allow assisted suicide and active euthanasia to become the norm, we run the risk of dissolving the social matrix of our society. The prospect of a physician terminating a life is diametrically opposed to the common perception of the role of the physician, and thus it can be societally destabilizing. The dislocation would be analogous to firefighters starting fires, police officers beating up and robbing the citizenry, judges rendering corrupt judgments, teachers teaching erroneous material, and clergy advising amoral and criminal behavior. When certain taboos in society are broken, and when certain roles of very trusted members of the society are reversed, the societal matrix faces dissolution. At the other end of the spectrum is the concept of pain, lack of dignity, and suffering, which as physicians we are admonished to alleviate at all cost. However, society has frequently accepted pain, suffering, and death from many of its members for it to maintain its cohesiveness. Although we mourn their deaths, we do not hesitate to sacrifice teenage soldiers for national goals. We bemoan, but do not dispute, the necessity of young firefighters and young police officers dying in the course of duty.
Some physicians and ethicists have hidden behind the concepts of double effect and primary intent. They agree that the toleration of unremitting pain when the means of deliverance exists is barbarous. However, their response is that medication can be prescribed until pain is relieved, even if the dose has to be so high that to control pain, apnea may result. Because the primary intent was pain control, not euthanasia, and because death was caused by the double effect of the pain medication, the practice then is ethical. There are many anecdotal reports in both patient and physician circles of physicians giving prescriptions to patients and then declaring, “Be sure not to take all these pills at one time, because you will die.”
During the next few years, these issues will be intensely debated. In the next decade, it is likely that several states will have legalized the concept of assisted suicide. Currently in three states (Nevada, Utah, and Wyoming), no laws exist that explicitly forbid assisted suicide. These states also do not recognize common-law crimes, a concept under which prosecutions for assisted suicide have been performed. Furthermore, there have been no judicial decisions in these three states on whether assisted suicide is a form of homicide. Technically speaking, therefore, assisted suicide can be performed in Nevada, Utah, and Wyoming, and the person performing the practice would be free from prosecution.13
The dying patient poses to the gynecologist clinical situations that in their complexity and requirement of expertise are no different than the initial disease that has led to the patient's terminal condition. It is therefore incumbent on the gynecologist to become expert in the ability to treat and provide for the needs of patients in these adverse circumstances.