I END-OF-LIFE considerations ^127 ^481
Obstetricians and gynecologists, including those in training, care for women throughout their life span and not infrequently need to participate in end-of-life decision making. Tragic accidents occasionally threaten the life of a pregnant woman and her fetus, and terminal outcomes occur for some patients with gynecologic cancer.
As a result, physicians are expected to present options and guide patients as they make decisions in advance of, as well as in the face of, such events. Life-threatening situations are never easy to deal with, even for the well trained.Regardless of a patient’s age, the opportunity to formulate advance directives allows her to express her choices about the treatment she would like to receive in the event she becomes unable to participate in decisions concerning her care and to identify the person she wishes to have act as her surrogate decision-maker. Physician orders for life-sustaining treatment (also known as medical orders for life-sustaining treatment) are available once a patient develops serious, progressive, chronic illnesses that may require standing medical orders. Familiarity with the ethical, legal, and psychosocial aspects of providing end-of-life care and with the facilitation of end-of-life decision making will assist clinicians in providing the most appropriate care to their patients and their families.
The first step in advance care planning and caring for a critically ill or terminally ill patient is to identify her values and beliefs through shared and ongoing communication between the clinician, patient, and her family, when applicable. Comprehensive and ongoing communication not only advances patient self-determination but also may help prevent ethical conflict and crisis. Clinicians should be especially careful not to impose their beliefs about benefits and risks on a patient or coerce her to achieve goals that are not in accordance with her values and beliefs.
For instance, the harms associated with ongoing therapeutic interventions may not be acceptable to some patients. Respect for a woman’s autonomy should guide the manner of care that she wishes to receive at the end of life. Her wishes should be respected, as relayed by her surrogate decision maker if she has not previously voiced or documented any wishes and does not have the capacity to make her own health care decisions. If physicians have moral reservations about providing certain forms of care or about stopping treatment, they should (if appropriate to the circumstances) make that known, in accordance with existing guidance about conscientious objection. If decisions made by a woman or made on her behalf by her surrogate decision maker cause the physician to experience significant moral distress or ethical conflict, the physician has the right to transfer care to a physician who has more expertise and is more comfortable with these choices (see also the “Ethical Issues” section in Part 1).Many clinicians are uncomfortable with the prospect of providing care for a patient at the end of her life. The ethos that has shaped U.S. medical research and practice for the past half century regards the use of interventions to promote cure and prolong life as the clinician’s primary obligation. But palliative strategies, such as pain relief, attentive and responsive communication with the patient about her health status, and the facilitation of communication with the patient’s family, also are essential components of care. There is a growing role for multidisciplinary health care teams when a care plan transitions towards palliation, including specialists from palliative medicine, spiritual care, and social work. As part of an ongoing effort to provide care even when therapeutic interventions are no longer warranted, it is important to note that neither the presence of a “do not attempt resuscitation” or “allow natural death” order nor specific directives regarding limitation of other treatments remove the responsibility for providing palliative and comfort care.
For the generalist whose patient is, or has been, under the care of a specialist, palliative care often is the most valuable service that can be offered. The idea that “nothing more can be done” improperly equates care with cure and should be avoided. It undervalues the considerable importance of the clinician in providing comfort to the critically ill or terminally ill patient.Legal Rights
The federal Patient Self-Determination Act of 1990 requires that all hospitals and other medical programs that receive federal Medicare and Medicaid money create a formal procedure to inform patients, on admission to the facility or at the time of enrollment in a health maintenance organization, about their rights under state law regarding health care decision making. This information includes the rights to refuse treatment and to formulate advance directives. An advance directive is the formal mechanism by which a patient may express her values regarding her future health status or appoint a surrogate decision maker for medical decisions. Facilities also are required to document in the patient’s record whether or not an advance directive was executed. Noncompliance with these requirements can mean the loss of eligibility to receive Medicaid and Medicare funds. Every state and the District of Columbia also have laws allowing for advance directives. State law will determine what an advance directive may contain and how and when it is followed.
A living will and a health care power of attorney are the two most common types of advance directives. Although both address issues of end- of-life decision-making, these documents serve different purposes and clinicians should be aware of their distinct functions. Depending on the laws in a particular state, a patient may decide that either a living will or a health care power of attorney is better suited to her needs. She also may have both types of directives or a single document that combines the aspects of both. Although legal advice to prepare an advance directive is not necessary, patients may want to consult with an attorney for guidance.
A living will is a written statement that tells the health care team and family in advance what types of health care the patient would accept or refuse if she were to lack decision-making capacity and be unable to express her wishes. A living will goes into effect only if the patient is unable to make decisions for herself. Until this time, the patient can change her mind at any time about what she has written. The laws about living wills vary from state to state, but in general, living wills address the following issues:
• Life-sustaining treatments, including cardiopulmonary resuscitation and respirator use
• Artificial nutrition and hydration if required as the main treatment to keep patients alive
• The degree and type of pain relief
• Major surgery and other major interventions, such as renal dialysis
Laws in some states are more restrictive than in others regarding when a living will can be used. Most states limit the rights of pregnant patients to refuse certain treatments through a living will because of the need to protect the developing fetus. Knowledge of local regulations is important. In addition, although physicians are legally obligated to honor a patient’s living will, they may not be required to do so if they believe in good faith that under particular concrete circumstances the request is not sound.
Standard, easy-to-complete patient forms for living wills usually are available from hospitals, insurance companies, physician offices, and health departments. Many forms also allow the patient to express her wishes regarding organ donation if she is a suitable candidate. When using a standard form, it is important to confirm that the form is valid under state law and to follow the instructions, including those that require witnesses or notarization.
In a health care power of attorney, the patient authorizes a health care agent to act as a surrogate decision maker and make medical decisions for her when she no longer is able to do so.
A patient may indicate in her health care power of attorney her wishes about her medical care, and she should discuss them with her surrogate decision maker, who will be expected to make decisions consistent with the patient’s wishes. In a health care power of attorney, the patient might specify what powers she is giving her surrogate decision maker. These powers may include the power to choose physicians, the right to decide whether to hospitalize the patient, and the right to accept or refuse treatment. The patient also may give the surrogate decision maker instructions as to whether she wishes to be an organ donor, if eligible. Because the health care power of attorney designates a surrogate decision-maker to elect or decline a number of different interventions, it generally is applicable in more situations than a living will. As with living wills, many states have restrictions on a surrogate decision maker who is appointed to make decisions on behalf of a pregnant woman.After a living will, health care power of attorney, or both are completed, several copies should be made to provide to physicians, an attorney, and relevant family or friends. If the patient has designated a surrogate decision maker, this individual should have copies of all advance directives. Patients should keep the originals in a secure place and provide a copy to the hospital when admitted. Patients also might want to keep in their wallet or purse a small card indicating that they have an advance directive, where the advance directive can be found, and the name and address of their surrogate decision maker, if any.
Unfortunately, only a small number of adults have prepared advance directives. Most patients do not want to think about becoming ill and being unable to care for themselves. It is best to prepare an advance directive when healthy. No one knows when a serious accident will happen. For these reasons, it is important that the medical team make the options of advance directives known and available to all patients regardless of age or medical status.
A good opportunity to initiate the discussion of end-of- life caregiving goals is during well-woman care at the time of the periodic examination or early in prenatal care. To facilitate these discussions, the patient history form could contain questions about a patient’s execution of an advance directive.Because a patient’s wishes regarding care might change over time or under different conditions of illness, these discussions should include occasional reevaluation of values and goals and, if necessary, updating of the advance directive. Decision making should be treated as a process rather than as an event.
Terminal Care
Provisions for Care: Hospital, Hospice, Home
Several options for the provision of terminal care commonly exist for dying patients and their families. Among the levels of care available are care in the hospital, care in a residential hospice, and care in the home with or without hospice support.
Seriously ill people generally seek out hospital care in the hope of avoiding death, pain, and suffering. However, when death is imminent, the anticipation of death in a hospital may be accompanied by the fear that medical care is less focused on human suffering and dignity than on medical logic and vital functions. In 1989, the Study to Understand Prognosis and Preferences for Outcomes and Risks of Treatment was undertaken in an effort to understand the characteristics of dying in U.S. hospitals. The baseline study showed that much terminal care in the United States is inappropriate. Many patients died after prolonged hospitalization or intensive care; many suffered from unrelieved pain. Several reasons exist for these problems. Clinicians may be uncertain about patient prognosis, may not agree with other members of the health care team about the course of care, may not know the patient’s preferences regarding life-sustaining interventions, or may have failed to discuss care options with patients and families.
Hospitalized patients and their families should be granted real decision-making powers concerning terminal care. Recommendations to grant patients more powers in these decisions include the following suggestions:
• Patients and families should be provided with explicit prognostic information.
• Discussions about life-sustaining care need to occur frequently. Typically, patients look to their physicians to take the lead in these discussions.
• The quality of discussions about life-sustaining interventions should be improved. These discussions should include information about providing or withholding therapy, with special attention to the patient’s values and concerns.
Hospice refers to a concept of care rather than a specific place for care. Hospice care provides support for people in the last phases of incurable diseases in the hope that they will live as fully or comfortably as possible. Care is provided in home-based and facility-based settings. No specific supportive therapy is excluded from consideration, and treatments generally are based on agreements among the patient, physician, and hospice team. The expected outcome is relief from symptoms and enhancement of quality of life. The patient’s and family’s needs should be considered when deciding between home-based and residential hospice care.
The core team providing hospice care typically consists of the patient’s attending and hospice physicians, registered nurses, social workers, spiritual counselors, family members, and trained volunteers. Hospice care also uses specialized team members to meet specific patient care needs. These team members may include allied therapists, art and music therapists, dietitians, pharmacists, nurses, and nursing assistants.
The hospice interdisciplinary team collaborates with the patient’s attending physician to develop a patient-directed, individualized plan of care. The plan of care is based on team assessments that recognize the patient’s and family’s psychologic and social values. At a minimum, the plan generally includes the following parameters:
• Problems and needs of the patient and her family
• Realistic and achievable goals and objectives
• Agreed-on outcomes
• Required medical equipment
• The use of advance directives in care plan development
Medicare coverage includes hospice benefits. Today, many private insurers and Medicaid also offer hospice benefits, a recognition of the compassion associated with hospice care and its cost-effective delivery.
Pain Management
Pain often is undertreated, particularly at the end of life. Current protocols often specify principles such as the idea that no terminally ill patient should be in pain. Studies indicate that concerned family members generally are satisfied with life-sustaining treatment decisions, but their primary concerns are with failures in communication and pain control. Pain relief is one of the primary goals (for the patient and her family) of terminal care (see also the “Acute and Chronic Pain Management” section in Part 4).
Posthumous Reproduction
A last consideration for the obstetrician-gynecologist who provides end- of-life care is use of gametes and embryos for posthumous reproduction.
In the course of fertility treatment and assisted reproduction, reproductive tissue (including oocytes, sperm, and embryos) may be cryopreserved. Patients should be strongly encouraged to state in writing their decisions regarding the disposition of their stored gametes and embryos in the case that one, or if partnered, both individuals die before the gametes or embryos are used. Options include transferring dispositional control of the gametes or embryos to a surviving partner or to a third party, donating to research, or discarding them. Such decisions should be honored. Occasionally, family members or surrogate decision makers may ask physicians to invasively procure posthumous gametes for reproductive purposes. The American Society for Reproductive Medicine states that a request to obtain oocytes after a woman’s death without the woman’s prior consent or known wishes need not be honored.
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