Refusal of a medical intervention is the right of a well-informed, competent adult—even if it is likely to result in death.1 Respect for patient autonomy and choice is one of the key principles of palliative care.2 When a patient has the ability to choose, it ensures that he or she can decide to avoid “over-treatment” options, also referred to as excessive or heroic measures, and specify the place of care, such as the home, hospital, or skilled nursing facility.
But what happens when an adult is faced with a serious accident or illness and is rendered permanently unconscious or is in a vegetative state? What about an individual who may be physically mobile, but incapable of making important decisions due to an illness such as Alzheimer’s disease? Advance directives for medical decisions are legal documents that allow adults to convey their decisions about end-of-life care ahead of time, enabling them to communicate their wishes to family, friends, and health care professionals, thereby avoiding subsequent confusion. Practicing pharmacists, as patient advocates, need not only to be abreast of their own legal rights and obligations as health care providers, but also to be informed about patient protections such as confidentiality of medical information and advance directives.
Advance Directives
An individual can project his or her autonomy over medical care into the future, when there may be a loss of capacity to make health care decisions, through the use of advance directives for medical decisions. As an important component of advance care planning, this process encompasses the consideration of various paths an illness may take and contingencies for responding to them, based on a patient’s values and care goals.1
Clinicians can attest to the fact that some individuals fear the thought of pain or confusion far greater than death itself; these patients should be treated quite differently with regard to medical procedures and pharmaceuticals than those who cherish each and every moment of life regardless of its quality.3 Given this reality, there are two types of legal documents—the living will and the durable power of attorney for health care. Both are called advance directives because they are used to direct, in advance of incapacitation, preferences for medical care when the patient can no longer communicate them.
Living will: This document is aptly named since it is meaningful while the person is alive. The living will clearly expresses an individual’s preferences for medical care—ranging from no interventions to maximum care.3 Since the living will is meant to provide clarity to health care practitioners, family, and friends in order to avoid confusion later on, the patient’s preferences should be written as specifically as possible. The living will should indicate how the patient feels about care intended to sustain life, with regard to such issues as: 1) the use of dialysis and ventilators; 2) cardiopulmonary resuscitation if respiration or cardiac function ceases, including vasopressor medications; 3) tube feeding; and 4) organ or tissue donation (TABLE 1).4,5 Since an individual has the right to accept or refuse medical care, wishes should be clearly stated.4 The living will becomes effective upon the loss of ability to make health care decisions and upon the existence of a medical condition specified in the advance directive, such as a permanent vegetative state, terminal illness, or end-stage chronic condition (e.g., heart failure, chronic obstructive pulmonary disease, Parkinson’s disease).3 Since state laws vary widely with regard to living wills, state-specific advance directives are advised (see Resources for the Patient). This document must be signed and witnessed; most states do not allow the health care provider to sign as the witness.3
Durable power of attorney for health care: This document stipulates that the patient has designated another person (proxy, agent, attorney-in-fact)—someone the patient trusts who understands the patient’s wishes and will act accordingly—to make health care decisions.
A proxy or agent should be mature and levelheaded, and comfortable with candid conversations; this individual should not be chosen out of feelings of guilt or obligation.6 A health care proxy may be different from the person chosen to handle the patient’s financial matters, and it may be helpful, although not necessary, if this individual resides in the same city or state as the patient.6 The durable power of attorney for health care empowers the health care proxy to make decisions in situations that have not been covered in the living will. The health care proxy could then discuss medical alternatives with health care providers and make decisions if an accident or illness rendered the patient incapacitated.3 Of note, patients should be made aware that the durable power of attorney for health care is distinct from a power of attorney authorizing someone to make financial transactions for them.6 The durable power of attorney for health care is a crucial tool for legally unrelated individuals, such as same-sex partners and unmarried couples, to ensure visitation rights, access to medical information, and the authority to make health care decisions.3 This document must be signed and witnessed; most states do not allow the patient’s health care provider to serve as the health care agent, unless the clinician is a close relative.3
Difficulties with living wills involve the inability of an individual to articulate what he or she does and does not want, and the inability of loved ones to interpret these wishes. Therefore, in addition to having advance directives in place, it is advisable that adults talk to their family and health care proxy about their wishes. There are readily available resources providing tools to help families with this conversation (see Resources for the Patient). Furthermore, doctors should be provided with a copy of the living will and durable power of attorney for health care. If possible, patients should discuss these documents and related issues regarding their health with their doctor or other health care provider and have them incorporated into the medical record.3 Geriatric patients are not the only adults who should be guided about the utility and protection of these documents. Since unexpected end-of-life situations can happen at any age, all adults should consider it important to have advance directives for medical decisions.
Advance directives should be reviewed and/or revised periodically as health conditions change or one’s life perspective changes.6 Changes should be discussed with family, friends, and the current health care provider; previous advance directives should be destroyed, and the revised documents distributed to the appropriate parties.
The Do Not Attempt Resuscitation Order
The Do Not Attempt Resuscitation order, also referred to as the Do Not Resuscitate (DNR) order, is a formal request by the patient not to undergo cardiopulmonary resuscitation (CPR). It does not have to be included in advance directives, nor does a patient have to have advance directives to have a DNR order.1 A doctor can include a DNR order in the medical record.
Palliative Care Services
According to the World Health Organization7:
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
Palliative care:
• provides relief from pain and other distressing symptoms;
• affirms life and regards dying as a normal process;
• intends neither to hasten or postpone death;
• integrates the psychological and spiritual aspects of patient care;
• offers a support system to help patients live as actively as possible until death;
• offers a support system to help the family cope during the patient’s illness and in their own bereavement;
• uses a team approach to address the needs of patients and their families, including bereavement counseling, if indicated;
• will enhance quality of life, and may also positively influence the course of illness;
• is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
The key principles guiding provision of these services are summarized in TABLE 2.
Hospice is the program that delivers palliative care through an interdisciplinary team (IDT) approach. While there are pharmacists with expertise in hospice and palliative care playing a central role on the IDT, all pharmacists should familiarize themselves with the key principles of palliative care so they may be part of the referral network in guiding patients, their family members, and caregivers to hospice and palliative care programs (see Resources for the Patient) when appropriate.
Conclusion
Advance directives are legal documents that allow an individual to convey decisions about end-of-life care ahead of time, thereby directing, in advance of incapacitation, preferences for medical care when he or she can no longer communicate. They provide a means to convey wishes to health care professionals, in addition to family and friends, thereby avoiding subsequent confusion.
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2. Lund S, Cox S. Palliative care. In: Holdcroft A, Jagger S. Core Topics in Pain. Cambridge, England: Cambridge University Press; 2005:317-321.
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Revised October 2007.
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www.who.int/cancer/palliative/definition/en/. Accessed June 18, 2012.
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9. Rabow MW, Hauser, JM, Adams J. Supporting family caregivers at the end of life: “they don’t know what they don’t know.” JAMA. 2004;291(4):483-491.
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