Both family caregivers and healthcare providers can look to established ethical decision-making standards that provide guidance in a challenging environment. When faced with an ethical dilemma, professional guidelines can help resolve the conflict. Although aimed at those who care for people with dementia, ethical guidelines published by the Nuffield Council on Bioethics provides guidance to all caregivers and healthcare providers working with older adults. When confronted with ethical conflicts:
The care of an older adult with a serious or potentially fatal disease begins with the onset of symptoms and continues until the patient is in remission or cured, or until the patient dies. Ideally end-of-life decisions are made early in the process, before they are needed.
Due to the sensitive nature of these decisions, there is often a conspiracy of silence that delays or prohibits discussion. Patients do not want to worry their families, and families are afraid that end-of-life discussions will cause the patient to become depressed or give up. Physicians often feel uncomfortable with these discussions and do not want to worry the patient or family. So end-of-life discussions are often delayed until patients are incapable of making their wishes known and, when the end nears, the issues remain unresolved and decisions are often made by people who may not know the patient’s desires (NCI, 2011b).
Care at the end of life is sometimes inconsistent with the patients' preferences to forgo life-sustaining treatment, and patients may receive care they do not want. For example, in the absence of an advanced directive, a patient’s desire to decline CPR may not be translated into a do-not-resuscitate (DNR) order. This may lead to unwanted treatment that prolongs a patient’s life against the patient’s wishes. Advance planning allows patients and families to reconcile their differences about end-of-life care and helps caregivers reach an agreement if they need to make decisions for the patient.
Families and surrogates who have discussed the contents of an advance directive with the patient have reported improved understanding, better confidence in their ability to predict the patient's preferences, and a stronger belief in the importance of having an advance directive.
Conversations with doctors about advance care planning have been shown to increase satisfaction among patients. Patients who talked with their families or physicians about their preferences for end-of-life care:
There are several types of advance directives. A living will allows people to declare in a detailed fashion (a written statement) their philosophies regarding medical care, nutrition, and other medical issues, so that healthcare providers and institutions can best carry out their wishes. A living will is a formal legal document authorized by state law that ensures personal autonomy while providing instructions for care in case someone becomes incapacitated and cannot make decisions. Living wills are not yet available or legally recognized in all states.
When drafting a living will, the following life-sustaining care should be addressed:
If a decision is made to forgo “aggressive medical treatment,” a patient can still receive antibiotics, nutrition, pain medication, radiation therapy, and other interventions when the goal of treatment becomes comfort rather than cure. This is called palliative care, and its primary focus is helping the patient remain as comfortable as possible. Patients can change their minds at any time and ask to resume more aggressive treatment. Any changes in the type of treatment a patient wants to receive should be reflected in the patient's living will.
Once a living will has been drawn up, patients should discuss their decisions with the people who matter most to them. Most states require that the document be witnessed. It is advisable to make copies of the document, place the original in a safe, accessible place, and give copies to the patient's doctor, hospital, and next of kin. Patients may also want to consider keeping a card in their wallet declaring that they have a living will and where it can be found (NCI, 2012).
A durable power of attorney is the legal document that names a patient’s healthcare proxy (HCP). This is an “agent” (a person) appointed to make a patient's medical decisions if the patient is unable to do so. An agent may have to exercise judgment in the event of a medical decision for which the patient's wishes are not known if the patient becomes too incapacitated to make such decisions. People usually assign someone they know well and trust to represent their preferences. Patients should ask this person for agreement to act as their agent. Once written, the durable power of attorney should be signed, dated, witnessed, notarized, copied, distributed, and incorporated into the patient's medical record (NCI, 2000).
Patients may also want to appoint someone to manage their financial affairs if they cannot. This is called a durable power of attorney for finances, and is a separate legal document from the durable power of attorney for healthcare. Patients may choose the same person or someone different from their healthcare proxy to act as their agent in financial matters (NCI, 2000).
A Do Not Resuscitate (DNR) order is a document that directs what measures should or should not be taken in events such as cardiac or respiratory arrest. Physicians may recommend a DNR order when cardiopulmonary resuscitation (CPR) would be considered medically futile and ineffective in returning the person to life. Patients may also request a DNR order when CPR is not consistent with their goals of care (NCI, 2012).
POLST is Physician Orders for Life-Sustaining Treatment. POLST communicates the patient’s desires for life-sustaining treatment and allows patients to choose what treatment options they want in an emergency situation. The POLST form becomes official orders for the patient in that situation and is valid in a hospital, nursing home, or long-term care facility (Morrow, 2010).
Artificial nutrition and hydration allows patients to receive nutrition and hydration when they are no longer able to eat or drink by mouth. This can be provided either through an IV or a stomach tube. Artificial nutrition and hydration is a medical treatment and can be refused by the patient. If patients are unable to make their wishes known, most states require that treatment continue in the absence of strong evidence of the patient’s wishes (Caring Connections, 2009).