Supportive Palliative Care

The level of treatment is simply a determination of what types of treatment the medical team should provide to a patient in light of expected outcomes. Determining the level or intensity of treatment involves balancing the burdens of a particular therapy against the benefits of that therapy or intervention to the patient. For example, all would agree that it is good to provide a treatment with a high probability of helping the patient, especially if the treatment carries a low burden in terms of pain or other hardship. But when might it be appropriate to stop life-support systems on a critically ill patient, or forego further aggressive medical treatment and choose to be kept comfortable? If a critically ill patient's heart stops (cardiac arrest), should medical personnel always attempt to restart it with cardiopulmonary resuscitation (CPR)? A competent, informed patient, working closely with the physician, should make these personal choices. If the patient is unable to make decisions, a healthcare decision maker should work with the physician on the patient's behalf.

A healthcare decision-maker is a person designated to make decisions with doctors or other healthcare providers on behalf of a patient who is no longer able to make his or her wishes known. You will be asked on admission to the hospital about healthcare decision makers and may designate a healthcare decision maker for yourself verbally by informing your nurse or physician. You may also designate a "healthcare decision-maker" known as your "agent" with a Medical Power of Attorney or in your Living Will. If you do not choose a person to speak for you when you are unable, state law provides guidance for the hospital to choose a person known as a surrogate to act on your behalf. In adult medicine, a healthcare decision maker speaking on behalf of an incapacitated patient is asked to make decisions based upon the patient's values, as they believe the patient would decide if able. In neonatal or pediatric medicine, a healthcare decision-maker is asked to make decisions for a minor patient based upon the "best interests" of the child.

Life-support systems are machines and other clinical interventions that assist the body in functioning properly if body systems fail due to illness or injury. These basic body functions include the ability to maintain normal heart function, the ability to breathe properly, to take in nourishment and to eliminate waste. A familiar example of a life-support system is the mechanical ventilator or "breathing machine."

Cardiopulmonary resuscitation (CPR) involves the emergency use of chemical, electrical, and mechanical treatments to restore heartbeat, blood pressure and breathing in the event that the heart or lungs suddenly stop working (cardiopulmonary arrest). CPR was first developed in the 1960s. Before that time, when death occurred, it was truly a final event. Since then, CPR techniques have developed that sometimes allow physicians, paramedics, nurses and other trained personnel to restore life. CPR is most effective for younger patients with heart disease or acute reversible problems whose heart or lungs suddenly stop working while in a setting in which others are able to offer immediate intensive medical intervention. CPR intervention in these cases may at times seem miraculous. In many other circumstances it is a futile treatment that does not work. For serious chronic illnesses severe enough to require hospitalization, CPR rarely restores health, especially in elderly patients. Most such patients fail to respond to CPR at all. When they do respond, the outcome is usually one of restoring the heart temporarily, often leaving the patient with permanent brain damage and dependent on long-term artificial life support. When CPR is medically inappropriate, or when a patient chooses to forego CPR, a "Do Not Resuscitate" (DNR) order is written in the chart. When the patient is in a nursing home or outpatient setting and a decision is made to allow natural death should it occur, an "Out of Hospital DNR" order must be obtained. This order will not affect the intensity or quality of other treatment the patient receives, including pain relief or other comfort measures.

Since the early 1970s, many cases involving the use and withdrawal of life-support systems have gone before the courts. Regardless of the individual circumstances, the main questions surrounding each case were: 1) whether or not the life-support systems served to prolong life or prolong suffering prior to inevitable death, and 2) whose right was it to decide whether to continue or withdraw particular therapies? These are difficult questions. How do we answer? Who decides? Our society recognizes that each of us is unique, and that decisions about healthcare will vary from person to person. Decisions may be based upon a combination of factors, including the lifestyle you lead, your religious or moral view and your past experiences. Federal and state law clearly state that it is your right to be informed by your physician of your choices, and to decide what type of appropriate medical treatment you wish to receive.

Decisions to accept or reject life-sustaining therapies, like other choices about medical treatment, must be made voluntarily by competent and informed patients, or if the patient lacks decision-making capacity or is unable to communicate, by another appropriately informed healthcare decision maker acting on the patient's behalf. This person could be a family member, legal guardian or a designated agent acting with a Medical Power of Attorney. If none of these persons exists and you have not made your wishes known with an advance directive, the law in Texas provides additional mechanisms for decisions to be made on your behalf.

While making these decisions can be difficult, we have many people who are here to assist you in addition to your physician. In addition to your physician, Baylor Scott & White’s social workers, chaplains and ethics committee members are available to review a situation and to help you understand your options. Your hospital has an ethics committee made up of physicians, chaplains, nurses, social workers, and community representatives. The ethics committee regularly analyzes and confronts issues behind the choices you may find yourself forced to make. Your physician or nurse can help you reach a chaplain, social worker or ethics committee member.

Baylor Scott & White Health is committed to the preservation of life and the alleviation of suffering; therefore, all patients admitted to Baylor Scott & White will receive appropriate medical treatment aimed at achieving these goals. Decisions to accept or reject treatments, including life-support systems and CPR, are made only after thoughtful consideration by the physician and the patient with decision-making capacity, or others involved in the decision-making process. It is the physician's responsibility to inform those involved of the patient's diagnosis and prognosis, appropriate treatment options, benefits and burdens of the proposed treatment, consequences of foregoing treatment, and likelihood of recovery. It is the patient's responsibility to inform the physicians of his or her wishes to accept or reject the various options available.

It is Baylor Scott & White's policy to respect the patient's choices regarding appropriate medical care. After discussion of your condition and treatment choices with your physician, you may reject particular medical care, even life-sustaining care. If you cannot act on your own behalf, a family member or other designated healthcare decision maker may work with your physician. It is the responsibility of persons making healthcare decisions on your behalf to assure that your desires and interests are protected. It is important to communicate your wishes about life support and intensity of care to your family and to your physicians. We encourage you to document your wishes by completing an advance directive.

An advance directive is a legal document that allows you to participate in decisions about the type of medical treatment that you wish at a time in the future when you may be unable to make your wishes known because of your illness. There are four types of advance directives recognized in Texas: Directive to Physicians and Family, Medical Power of Attorney, Out of Hospital Do Not Resuscitate Order, and Declaration for Mental Health Treatment.

A Directive to Physicians and Family (Living Will) is a legal document that allows you to specify what kinds of appropriate medical treatment you wish to accept or reject if you should become terminally or irreversibly ill and are unable to make your wishes known. Under Texas law, terminal and irreversible conditions are separately defined.

A terminal condition is defined as an incurable condition caused by injury, disease or illness that according to reasonable medical judgment, produces death in six months, even with available life sustaining treatment provided in accordance with the prevailing standard of medical care. For example, many serious illnesses may be considered irreversible early in the course of the illness, but they may not be considered terminal until the disease is fairly advanced. In thinking about terminal illness and its treatment, you may wish to consider the relative benefits and burdens of treatment and discuss your wishes with important persons in your life.

An irreversible condition is defined as a condition, injury or illness that: may be treated, but which is never cured or eliminated, that leaves the person unable to care for or make decisions for that person's own self; and without life sustaining treatment provided in accordance with the prevailing standard of medical care, is fatal. For example, many serious illnesses such as cancer, failure of major organs (kidney, heart, liver, or lung), and serious brain diseases such as Alzheimer's dementia, may be considered irreversible early on. There is no cure; however the patient may be kept alive for prolonged periods of time if the patient receives life sustaining treatments. Later in the course of the same illness, the disease may be considered terminal when, even with treatment, the patient is expected to die. You may wish to consider which burdens of treatment you would be willing to accept in an effort to achieve a particular outcome. This is a very personal decision that you may wish to discuss with your physician, family, or other important persons in your life.

For either or both conditions, you may choose to reject life-sustaining treatment and accept comfort care only, or the patient may request the continuation of medically appropriate treatment in an attempt to sustain life.

In addition, there is a space in the Living Will to state additional wishes, such as:

• list specific treatments you do or do not want,
• donate organs or tissues, or
• specify a person to make decisions for you if you have not previously given a medical power of attorney to another person on your behalf.

In Texas, Living Wills are effective until they are revoked. If you have an old Living Will, and choose to update it, the document most recently completed will take priority. It is considered a good idea to periodically review, initial and date your Living Will to show that it still expresses your wishes.

A Medical Power of Attorney is a powerful legal document that allows you to appoint an individual (an agent) to serve as your healthcare decision maker. This person may make a broad range of healthcare decisions for you at a time in the future when you are unable to make decisions for yourself. These healthcare decisions may include decisions to accept or reject life-sustaining treatment, whether or not a physician finds you irreversibly or terminally ill. It is very important that the person you appoint as your agent under the Medical Power of Attorney knows your wishes for these circumstances.

Inappropriate or unwanted CPR in the hospital is prevented by writing a Do Not Resuscitate order. In the nursing home, home care or other non-hospital setting, an Out of Hospital DNR order must be completed if you wish to prevent emergency medical personnel from performing CPR at the time of death. This type of advance directive is especially important to those who are irreversibly or terminally ill and who wish for a peaceful death and wish to avoid CPR that will not restore their health.

This is an advance directive, which applies only to decisions about mental health treatments in the event the patient's illness leaves him or her incapable of exercising choice at a later date. The declarations apply only if the person making the declaration is declared to be incompetent by a court. Further information on mental health declarations is available from the social work office.

The physicians and staffs of Baylor Scott & White encourage all patients to consider giving the gift of life through organ and/or tissue donation at the time of death. When a patient dies who is a potential donor, the family or patient representative will be approached with the opportunity to donate organs and/or tissues as appropriate. Making a decision in advance about organ and tissue donation may be comforting to you and your family members.

Regardless of any decision about level of treatment or termination of life-support systems, patients at Baylor Scott & White will continue to receive medical and nursing care necessary to prevent suffering. This "comfort care only" approach to medical treatment is sometimes the best treatment for the patient with a terminal, incurable or overwhelming illness. While we must all sooner or later surrender to the inevitability of death, we continue to provide care necessary for the comfort and dignity of the patient. Specialists in hospice care are especially helpful to terminally or irreversibly ill patients and their families when a decision has been made to withdraw or withhold life-sustaining treatments and allow a peaceful and natural death to occur.

On rare occasions, there may be ethical uncertainties or disagreements about your medical treatment, including advance directives, the level of treatment appropriate to your condition, or the authority of your healthcare decision maker. All Baylor Scott & White Health institutions have access to ethics committees and ethics consultants who may offer counsel and assist in resolving ethical issues that might arise. You, your family, healthcare decision maker, physician or any member of your healthcare team may request guidance from the Ethics Committee. This service is provided without cost to you or your insurance plan.

Within Baylor Scott & White, we will make every reasonable attempt to honor your advance directive and your wishes as expressed by your healthcare decision maker if you are unable to speak for yourself. You or the person who acts as your healthcare decision maker have the right to reject treatments offered for your condition, but you do not have an unlimited right to receive treatments that are outside the standards of accepted medical practice. Texas law provides a process for resolving ethical disagreements between patients, families and physicians. Should such a disagreement arise, you and/or your healthcare decision maker will be informed of Baylor Scott & White policies for implementing this process.

You can revoke any advance directive simply by destroying the document, signing and dating a written statement that expresses your desire to revoke the directive, or by telling your physician or nurse. If you wish to change instructions in an advance directive, it is best to execute a new directive.

Find all the forms you need in our advance directives page.

Although it is not mandatory, you may wish to discuss your advance directive with your personal attorney. You should also discuss your wishes with your family, next of kin or other responsible parties. Give a copy of your advance directive(s) to your physician and family. Finally, please bring a copy with you to the hospital so that it can be placed in your records.