Advance Directives

Key Points

• An advance directive is a legal document expressing a person's preferences regarding care in the event the person becomes unable to make decisions regarding care.

• The most important item is the appointment of a health care surrogate as the patient's proxy.

• Advance directives vary from simple to complex, but still cannot cover every possibility.

• A variety of state-specific advance care-planning documents are available on the Internet.

An advance directive is a legal document that allows competent adults to express their intentions regarding medical treatment in the event that they lose decision-making capacity because of a terminal illness. Types of advance directives are as follows:

Living will: A form regarding the limitation of life-sustaining medical treatment in the face of a life-threatening illness.

Health care surrogate: The appointment of a person to serve as the health care proxy (or medical power of attorney) to make medical decisions according to the incapacitated patient's preference.

Durable power of attorney: Designates a person to make health, financial, and legal decisions if the patient is unable to do so.

"Do not resuscitate" order: Determined by the physician and patient or the patient's health care surrogate or power of attorney.

If a person has only one action to take, it should be to appoint a health care surrogate as the person's proxy. Family physicians should encourage every patient to name a substitute decision maker, proxy, or surrogate who can represent the patient's wishes when needed. One problem is that often the surrogates named in the advance directive are not present to make decisions or are too emotionally overwrought to offer guidance.

Each state has its own laws governing advance directives, available at www.caringinfo.org. Other sites for useful advance directive information follow: www.familycaregiversonline.com/legal-medical.html www.uslivingwillregistry.com/forms.shtm

The Patient Self-Determination Act of 1991 requires hospitals and other health care institutions that receive Medicare or Medicaid funds to inform patients of their right to formulate an advance directive. The purpose is to encourage greater awareness and use of advance directives so that situations of ambiguity can be avoided (Field and Cassel, 1997). The act requires hospitals to provide written information to all patients concerning their rights under state law to refuse or accept treatment and to complete advance directives.

Almost 90% of Americans say that they would not want extraordinary steps taken to prolong their lives if they were dying, but only 20% have put that wish in writing in the form of a "living will." The version of the living will shown in Figure 5-1 has several advantages over others. It clarifies the person's preferences, and instead of locking elements arbitrarily in place, it leaves two witnesses as guardians of the individual's wishes and intentions, with discretion to use their judgment in the specific circumstances. This statement presumes goodwill on all sides and should be helpful to all concerned.

There is no one-size fits-all approach to advance care planning. Some people prefer a simple approach, and others choose a more comprehensive, step-by-step process. The simple approach prevents support measures from being undertaken that should never have been initiated. It is best to have a patient both complete a living will and designate a health care surrogate, to ensure that the person receives the desired medical care.

Although advance directives are not guarantees that the patient's wishes will be followed, without them, these wishes probably will not be followed. Since the case of Terri Schi-avo, a 41-year-old woman whose feeding tube was removed in 2005 after a legal battle and political storm, patients are much more aware of the need to declare their feelings about life-sustaining treatment. The Schiavo case illustrates the importance of advance care planning to save both family and physicians considerable anguish.

Unfortunately, the legal restrictions arising out of the Schi-avo case may be counterproductive. Courts in several states have now ruled that life-sustaining interventions must be continued in the absence of clear and convincing evidence that the patient would not want them. D espite efforts to make advance directives address a greater variety of terminal situations, it is almost impossible to state accurately the patient's wishes in every scenario. Advance directives are poorly equipped to cope with the complex clinical situations that often arise, emphasizing the need to appoint a health care surrogate.

In the past, end-of-life decisions were usually limited to deciding whether or not to use cardiopulmonary resuscitation (CPR). Now the range includes feeding tubes, hydration, hos-pitalization, antibiotic use, and terminal sedation. The more the family can focus on what the patient would want, instead of what makes the family members feel most comfortable, the better will be the final decision (Lang and Quill, 2004).

I wish to live a full and long life, but not at all costs. If my death is near and cannot be avoided, and if I have lost the ability to interact with others and have no reasonable chance of regaining this ability, or if my suffering is intense and irreversible, I do not want to have my life prolonged. I would then ask not to be subjected to surgery or resuscitation. Nor would I then wish to have life support from mechanical ventilators, intensive care services, or other life-prolonging procedures. I would wish, rather, to have care that gives comfort and support, that facilitates my interaction with others to the extent that this is possible, and that brings peace.

In order to carry out these instructions and to interpret them, I authorize-

to accept, plan, and refuse treatment on my behalf in cooperation with attending physicians and health personnel. This person knows how I value the experience of living, and how I would weigh incompetence, suffering, and dying. Should it be impossible to reach this person, I authorize

-to make such choices for me. I have discussed my desires concerning terminal care with them, and I trust their judgment on my behalf.

In addition, I have discussed with them the following specific instructions regarding my care: [List instructions.]

Date-Signed-

Witnessed by_and by_

Figure 5-1 Example of a living will.

CPR can be lifesaving in some cases, but in most terminally ill patients, it is extremely unlikely to result in return of satisfactory cardiopulmonary function, survival to discharge from the hospital, or ability to live outside an institution. In a large multi-institutional study, physicians did no better than chance in identifying their seriously ill hospitalized patients' wishes to forgo CPR, and such wishes, even when known, rarely were respected when the physician believed that another course was more appropriate (Connors et al., 1995).

A relatively simple Advance Care Plan Document is available from Project GRACE (Guidelines for Resuscitation and

The complete reference list is available online at www.expertconsult.com.

American Association of Retired Persons. Consumer information regarding living wills, life after loss, and end-of-life issues. www.aahpm.org

American Academy of Hospice and Palliative Medicine: A professional organization providing educational resources, jobmart, news and challenges in symptom management. http://cancer.org

American Cancer Society (ACS). Includes complete listing of services offered. www.americangeriatrics.org

American Geriatrics Society. Practice guidelines and educational materials to those caring for older adults. www.ampainsoc.org

American Pain Society. Professional education regarding pain management and research. www.asbh.org

American Society for Bioethics and Humanities. Educational materials for health care professionals engaged in academic bioethics and the health-related humanities.

Care at End-of-life) at www.projectgrace.org. A document that attempts to address a variety of clinical situations that may arise is the Medical Directive site at www.medicaldirect ive.org. This permits patients and physicians to download a scenario-based living will that includes six different scenarios to cover a variety of situations, plus a personal statement and a Health Care Proxy. See Web Resources for additional sites and more information.

Euthanasia and assisted suicide are discussed online at www.expertconsult.com.

American Society of Clinical Oncology. Patient information regarding symptom and disease management. www.adec.org

Association of Death Education and Counseling. Educational resources on coping with loss, bereavement rituals, grief counseling and other end-of-life issues. http://getpalliativecare.org

Center to Advance Palliative Care. Tells patients where to find palliative care. www.abanet.org/aging

Commission on Law and Aging of the American Bar Association. Consumer information on elder abuse, guardianship law, Medicare advocacy, and cognitive impairment. www.compassionandchoices.org

Compassion & Choices. Nonprofit organization to improve care and expand choice at the end of life, including links to Facing a Terminal Illness, Planning for the Future, and Help for a Loved One.

EVIDENCE-BASED SUMMARY

Regularly assess patients for pain, dyspnea, and depression at end of life (SOR: B; Qaseem et al., 2008).

Use therapies of proven effectiveness to manage pain at end of life, including NSAIDs and opioids (SOR: A; McNicol et al., 2005; Nicholson, 2007; Qaseem et al., 2008; Quigley, 2007; Wiffen and McQuay, 2007).

Use therapies of proven effectiveness to manage dyspnea at end of life, including opioids and oxygen (SOR: B; Qaseem et al., 2008; Cranston et al., 2008; Jennings et al., 2001).

Use therapies of proven effectiveness to manage depression at end of life, including tricyclic antidepressants, SSRIs, or SNRIs (SOR: B; Qaseem et al., 2008).

Ensure that advance care planning, including completion of advance directives, occurs for all patients with serious illness (SOR: C; Qaseem et al., 2008).

Use anticonvulsant drugs as adjuvants in management of pain (SOR: B; Wiffen et al., 2005a, 2005b; 2005c). Use antidepressants as adjuvants in management of neuropathic pain (SOR: B; Saarto and Wiffen, 2007). Treat anxiety at end of life (SOR: C; Jackson and Lipman, 2004). Treat constipation at end of life with laxatives (SOR: B; Miles et al., 2006).

Use therapies of proven effectiveness to manage nausea and vomiting at end of life (SOR: C; Perkins and Dorman, 2009).

For patients receiving palliative radiotherapy, if pressure symptoms occur in the beginning of treatment, or if symptoms are expected during therapy, start steroid therapy (e.g., dexamethasone, 3-10 mg x 1-3 orally or parenterally) (SOR: A; Finnish Medical Society, 2003).

Opioids are effective in the treatment of dyspnea (SOR: A; Finnish Medical Society, 2003).

Opioids are effective in the treatment of dyspnea; starting dose with morphine solution is 12 to 20 mg; starting dose with long-acting morphine is 10 to 30 mg; and dose is increased by 20% to 30% (up to 50%) (SOR: A; Finnish Medical Society, 2003).

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