Truth Telling

Medicine is a moral enterprise grounded in a covenant of trust. Historically, patients innately trusted their health care providers (HCPs) to act in their best interests and did as they were told. When medicine began to move away from such a paternalistic approach, patients were faced with a new dilemma. Were HCPs divulging the full story or just enough information to prompt the patient to act as the HCP desired? Medicine cannot be a public-service calling without the virtues of humility, honesty, intellectual integrity, compassion, and effacement of excessive self-interest.

One of the central issues in end-of-life care has been controversy over what the terminally ill patient should be told about his diagnosis and prognosis. In the Hippocratic tradition, the standard of practice in many cultures has been to refrain from telling patients about their impending death. This approach has been used in Japan, Eastern Europe, and many Latin American countries.

In 1961, a survey examined physicians’ attitudes toward disclosing a cancer diagnosis to their patients. Eighty-eight percent of respondents usually followed a policy of nondisclosure . The same study, repeated in 1979, showed that 98% of physicians now usually followed a policy of disclosure . During this period, paternalism gave way to patient self-determination. The HCP no longer had final say in the patient’s care; rather, it was the patient himself or herself, now operating on principles of autonomy and informed consent. Improvements in cancer treatment options, improved survival rates, fear of malpractice suits, altered social attitudes about cancer, and the increased recognition of communication as an effective means of enhancing patients’ understanding and compliance also aided this shift in disclosure practices.

There may be times when cautious or limited disclosures are necessary. But to maintain trust, the whole truth should be divulged in a manner appropriate to the patient’s circumstances. Information about a serious illness or impending death should be shared or offered to patients, even if they do not specifically request the information. Patients have legal and moral rights that must be respected. The question must no longer be “Should we tell?” but rather “How do we share this information with the patient?”

Helping Patients Make Informed Decisions

Focus. End-of-life care should focus on the patient’s life and current experience. Too often death is seen as a failure of treatment, not a natural event. This deprives patients of the opportunity to enter what Kübler-Ross calls “the final stage of growth.” Too often physicians either withdraw from patients in the terminal stage of illness or encourage them to continue intensive therapies and not “give up.”

Self-determination. Individuals vary in their tolerance for pain and suffering. Only patients can determine whether they are suffering or are suffering too much. They should receive state-of-the-art comfort care accordingly. Providers should prescribe opioid analgesics generously for pain and breathlessness. Patients should control the dose and frequency of administration. Symptoms such as hiccups, nausea, diarrhea, itching, and fatigue can be oppressive and should not be disregarded.

Autonomy. Decisions about end-of-life care begin and end with the autonomous patient. The answer to the question “Who should decide?” is “The patient decides.” Even very ill patients usually retain decisional capacity. Loved ones and providers should avoid inadvertently usurping decisions when communication becomes difficult. If patients are no longer capable of decision making, their known wishes or their values and end-of-life priorities still dictate decisions.

Personal beliefs. Patients should feel empowered to make decisions based on their own deeply held values and beliefs, without fear of moral condemnation or political interference. Law and policy should not place the provider’s moral beliefs above the patient’s or protect providers who withhold vital information about treatment options. Dying patients should not be subject to subtle or overt suggestions that their choices are wrong or immoral.

Informed consent. Patients must have comprehensive, candid information in order to make valid decisions and give informed consent. Patients should receive encouragement to exercise a “BRAIN” process assessing the:

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  Benefits

  
  
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  Risks

  
  
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  Alternatives, their own

  
  
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  Insight into what these mean to them

  
  
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  Nothing (The consequences of doing nothing before giving consent to procedures and treatment).

Four crucial questions often go unasked or incompletely answered when a patient consents to disease-specific treatment:

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  What is the chance it will prolong my life?

  
  
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  By how much?

  
  
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  What are the side effects?

  
  
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  What are the alternatives?

Providers should not withhold information about legal alternatives. This deprives the patient of crucial information to give informed consent.

Balance. Patients should feel empowered to make decisions on the basis of their own assessment and the balance between quantity and quality of life. Patients may reject treatment because of unacceptable side effects or extraordinary demands on their precious time and energies.

Saying “no” to burdensome treatment may mean saying “yes” to the joyful experiences of life for as long as possible.

Planning for Death

In 2013 (the most current information available at this writing), 2,596,993 people died in the United States. Death can occur unannounced at any given moment. Although many Americans will live well past 70 years of age, finally succumbing to heart disease, cancer, or stroke, not everyone shares this fate. Some of the cases that shaped American attitudes toward dying involved young adults. Karen Ann Quinlan was only 21 years old when she had a cardiopulmonary arrest and fell into a persistent vegetative state. In In the Matter of Quinlan, the Supreme Court of New Jersey ruled that her family could remove her from a ventilator. This landmark ruling led to the prevalence of ethics committees in medical institutions and to the creation of advance directives. Nancy Cruzan was only 25 years old when she fell into a persistent vegetative state after being involved in a car accident. In its landmark decision, the Supreme Court of the United States paved the path for surrogate decision making in the removal of artificial nutrition and hydration. Terri Schiavo was 26 years old when her heart stopped. She, too, fell into a persistent vegetative state and, in 2005, became one of the more than 300,000 Americans withdrawn from artificial food and fluids. Brittany Maynard was a 28-year-old healthy newlywed when she developed terminal brain cancer and made the choice to move to Oregon to take life-ending medication under Oregon’s Death with Dignity law. The sagas of these four young women illustrate the importance of planning and sharing values and priorities for the end of life with family and friends.

When thinking about the end of life, personal values about quality of life need to be considered. What makes living meaningful must be carefully weighed. Urge patients to talk with loved ones about their views and to choose someone to speak for them if they become unable to speak for themselves.

A patient’s right to refuse medical intervention is well established in medicine and law. Patients and families of unconscious patients routinely choose to stop or not start ventilators, artificial nutrition and hydration, and antibiotics. Patients voluntarily stop eating and drinking (VSED). Do not resuscitate (DNRs) orders are being replaced with orders to Allow Natural Death (AND). Either one can prevent the distress that futile attempts at cardiopulmonary resuscitation (CPR) can bring. Surrogate decision makers may elect for palliative or terminal sedation.

The purpose of completing end-of-life documents is to make intentional decisions and express them in writing. Completed documents, discussed and shared with family and friends, lay the foundation for decision making in line with a person’s values and priorities at the end of life.

Sectarian health care directives. Some religiously affiliated health care institutions may decline to honor expressed health care choices that conflict with their doctrine and beliefs. An individual may specify in advance that admission to a religious facility does not imply consent to particular care mandated by its ethical, religious, or other policies. If the facility declines to follow the preferences in an advance directive, a prepared advance directive addendum directs that the patient be transferred to a hospital, nursing home, or other institution that will agree to honor the instructions set forth in the directive.

Lesbian, gay, bisexual, transgender (LGBT) families. The LGBT community faces additional challenges at the end of life. Until recently, the partners of LGBT patients were routinely not allowed to participate in the medical treatment decisions of their loved ones or even visit them in the hospital. In 2014, in the case of Ob ergefell et al. v. Hodges, Director, Ohio Department of Health, et al., the U.S. Supreme Court granted constitutional protection for same-sex marriage. It remains to be seen how this right will play out at a local level with end-of-life decision making and respecting surrogate decision making established by these marriages.

Advance Directives

It is prudent for adults to complete an advance directive for health care (AD). Regardless of age and health status, none can predict when an event might leave a person unable to speak for himself or herself. If patients are not able to make or communicate decisions about medical treatment, a written record of their intentions for end-of-life care is invaluable.

Advance directive is a generic term used for documents that traditionally include a living will and the appointment of a health care agent. These documents allow individuals to provide instructions relating to their future health care, such as when they would want to receive all medical treatment available or when they would want to stop or decline life-sustaining medical treatments.

The living will portion of an AD allows the patient to specify which kinds of treatments and care are desired if he or she were permanently unconscious or terminally ill and unable to speak for himself or herself. The second part, often referred to as the durable power of attorney for health care, allows the appointment of someone to act on the patient’s behalf in matters concerning his or her health care when the patient is unable to speak for himself or herself because of illness or incapacitation. Please note that the person appointed to speak on behalf of the patient may be called a health care agent, proxy, surrogate, or representative.

An AD allows patients to express their wishes about decisions regarding life-sustaining treatments, including treatments and procedures a patient does or does not want. Statements regarding organ and tissue donation may also be included. The instructions provided in this portion of the form serve as evidence of the patient’s wishes.

The durable power of attorney portion of an AD allows the appointment of an agent to speak on behalf of the patient and communicate his or her wishes when the patient is not able to do so. Appointing an agent and making sure the agent is aware of and understands the individual’s values and priorities is one of the most important things that can be done. If the time comes for a decision to be made, the agent can participate in relevant discussions, weighing the pros and cons of treatment decisions on the basis of the patient’s previously expressed intentions. The agent can act on behalf of a patient even when decision-making capacity is only temporarily affected. The patient need not be permanently unconscious or terminally ill but may be stuporous, delirious, or demented, for example. The degree of authority (how much or how little) the patient wants his agent to have can be defined in this document. Alternate agents can also be appointed in case the primary agent is unwilling or unable to act. Additionally, the patient may name specific individuals who are not to participate in decision making. If an agent is not appointed, the law in most states provides for other decision makers by default, usually beginning with the spouse and adult children and ending with the patient’s physician. When physicians tend to err on the side of prolonging life, their decisions may not be consistent with the patient’s desires. In extreme cases, if the patient does not have an AD, a court may be required to appoint a guardian.

Advance directives ease the burden of uncertainty on family members. They help relieve the stress and doubt associated with having to make important health care decisions on behalf of someone you care about but without clear instruction. By making wishes known in advance, patients can help guide their families and friends, who may otherwise struggle to decide the best course.

Advance directives are legally valid in every state. Each state and the District of Columbia have laws that permit individuals to sign documents stating their decisions for life-sustaining treatment if they are permanently unconscious or terminally ill. A few states provide for such instruction in the case of advanced dementia as well. The specifics of these laws vary, but the basic principle of listening to the patient’s wishes is the same everywhere. The law gives great weight to any form of written directive. If the courts become involved, they usually attempt to follow the patient’s stated values and preferences, especially if they are in written form. An AD may be the most concrete evidence of wishes possible. It is important to note that although it is legal to have an AD in every state, states vary in the degree to which they require adherence to the directive. Most states offer legal protection to HCPs for following, or deciding not to follow, the instructions contained in an AD.

An AD can be changed or cancelled at any time. This can be accomplished by notifying the agent or HCP, in writing, of the decision to do so. It is best to destroy all copies of the old AD and create a new one. Make sure to provide copies of the new form to the appropriate individuals. It is strongly recommended to review ADs every year and resign and redate them to indicate that the document continues to reflect current wishes.